My name is Rosemary and I have been dealing with endometriosis for the past 21 years.
I had my first laparoscopy in 1992 due to sudden onset of pain from a ruptured ovarian cyst. They found endometriois on the right side. Over the years, the endometriosis spread to the left side, bladder and intestines.
I had a total abdominal hysterectomy in 1995, when I was only 28 years old and only two months after having my youngest daughter. My daughters are miracles and I am extremely lucky to have them despite these issues. I was convinced to have the hysterectomy after the 6th laparoscopy for endometriosis. This was after the right ovary, tube and appendix were already removed and I had tried many techniques for pain management including acupuncture, acupressure, hormones, Lupron, Depo Provera, meditation and many strong medications. I would try anything, I told one doctor that I would sacrifice a chicken in the corner if that would help. Unfortunately the pain was relentless. It was and is a constant, stabbing, twisting pain.
During the hysterectomy they found Stage 4 endometriosis all throughout the abdominal cavity. Unfortunately the doctor didn’t remove the endo during the surgery. They just removed the left side ovary and tube, uterus and cervix. The day after the surgery I was given Premarin. The pain returned with a vengeance within 6 months. This is when the real “fun” started. I had to find a doctor that understood endo after hysterectomy. I have had 14 more surgeries since the hysterectomy. In each one and over ten years after the hysterectomy they found live endometriosis. The hysterectomy did not resolve my endometriosis. The endometriosis was deep in the peritoneum, along the bladder, on the intestines and it kept returning. After each surgery I would get about 12-18 months of relief.
I worked with many different doctors from OB/GYN’s to renowned reproductive endocrinologists and general surgeons who specialize in adhesions. During each surgery they found many thick adhesions gluing my insides together. I had my last surgery in Atlanta last year at the Center for Endometriosis Care and they were fantastic. I had relief for about 13 months. Unfortunately the pain has returned.
I have returned to pain management doctors. This is such a frustrating disease. I have had many doctors tell me I was “just stressed,” or that because I am a single Mom with two daughters, I’m just depressed and the pain is in my head. I have also had amazing doctors who have listened and explained the disease and how they can help. I have had countless tests that show nothing and yet every laparoscopy has shown either severe adhesions or residual endometriosis or issues that need to be corrected.
The best advice I can give is trust yourself! You know your body better than anyone and if you aren’t getting a doctor to listen, find another one! Be your own advocate and educate yourself on this condition. There has been tremendous progress made in the last 10-15 years. I am sure they don’t give Premarin right after hysterectomy anymore and I would hope they are removing the endometriosis during the surgery and not leaving it to grow as they did with me.
There are a whole list of issues with not being able to take hormones. I have tried many substitutes including soy and phytoestrogens and some combinations work better than others. There are some very good holistic treatments and everyone has a different experience.
I hope this has provided some insight. I am not a medical person, I am actually a finance executive and through research and articles from great sources I have learned a lot about endometriosis. There needs to be more awareness and discussion on this, as there are way too many women suffering. Good luck and God Bless!!!
Participate in Research
Hormones MatterTM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.
To take one of our other Real Women. Real Data.TM surveys, click here.
To sign up for our newsletter and receive weekly updates on the latest research news, click here.
In March 2015, at the age of 32, I had a left salpingo oophorectomy due to a massive cyst on the ovary. Six months later I had a total hysterectomy because another huge cyst had grown on the right ovary. I thought my issues would be gone. No one mentioned the presence of endometriosis.
I never stopped bleeding. I have been back and forth to many doctors but no one ever found anything. Over 3 years later and I’m still bleeding. Recently it got a lot worse and I began to bleed from my rectum as well. I just got the results of my MRI. I have invasive bowel endometriosis. I’m scared, because I know I need surgery.
Hello I had a partial hysterectomy on june 28th 2018 (kept my ovaries) I am starting to feel the same pain I felt prior to my surgery. I am not happy that you all have been going through this years AFTER A HYSTERECTOMY. What’s the point of more surgery and more doctors spending more money if it NEVER goes away. Not one person said it’s completely gone and they are not in pain. I’m sorry to be a negative Nancy but unless there is a break in medicine and science regarding this issue i must prepare to be in pain for the rest of my life.
I’m am completely dumbfounded after reading all this information on endo. I honestly thought the severe pain I experience was all in my head, so to speak. Not once have I been informed that you can still have endometriosis after a hysterectomy. I’ve had a total of 5 surgeries, the last 3 being exploratory, hysterectomy, and removal of the ovary I was praying I would be able to keep. My thoughts have been “You are not in pain, there’s no way!!! Everything is gone.” Wow!!! This explains so much!! I am honestly one step away from losing a man that is absolutely amazing and treats me like a queen. I have no interest in sex at all because it hurts so bad that I cringe at the very thought. The sad thing is, I don’t think he believes me. It personal in his eyes. He thinks I’m using pain as an excuse because I’m no longer interested in him. That’s just not true. It’s not only the pain, but the, I’m just guessing here, the hormonal imbalance. I swear sometimes I could bite a nail into. I just wanna be left alone and be by myself. I’ve got to get this in control or I’m gonna lose everyone that I love. The overwhelming pain, moodiness, anxiety, panic attacks, and pushing people away has to stop, but I don’t know how to control it. I know I need help and I know that something just isn’t “right” but without insurance, I cannot do a thing about this. Please, don’t misinterpret my words for being suicidal nor wanting to harm anyone. I feel mental sometimes, but I damn sure do love me!!!! And, as far as others go, I say what I need to say and walk on like a champ!!! Oh, let’s not forget the miserable hot flashes that wake me up 10 times a night drenched in sweat!!! Did I mention that I may sleep 2-4 hours a night??? I’m just miserable in this skin!!!❤️
Hi Staci!! I completely understand your feelings and it is horrible. I do highly recommend you try to talk to a doctor that could take payment plan or something. They have many alternatives. Please see a good experienced doctor with endo. As for the emotional rollercoaster I get it and it sucks!! Please be easy on yourself and do as much as you can. Please take care of yourself!!!
Call Dr Reiss , in beverly hills if you really want help with sex pain?
Does anyone suggest a connection between endometriosis and symptoms of interstitial cystitis?
I would be very interested to know the same. Had a hysterectomy (LAVH w/Right salpingooophorectomy) in 2008 to try and rid my endo. I’m now having bladder issues which may/may not turn out to be IC.
Yes they have and I have had several tests and it isn’t IC by rather thick adhesions on the bladder.
When I was 34 I had a hysterectomy for andenomyosis. I am 44 now and for the past few or more (?) years I have had horrible stomach pain with cramping and sometimes it made me vomit. I would also get twinges and pain in what seemed to be my ovarian areas or large bowel area. I also experience diarrhea at that time. A day after my stomach pain, it feels like my entire abdoman wad a punching bag. 2 years ago it wasn’t as frequent as it is now. I talked to my MD and she sent me to a GI doctor. They did a colonoscopy (of which I have to have every 5 years do to my family history of colon cancer) and an endoscopy. Everything looked good. Took tissue samples from colon and stomach. All was good. GI doc kept trying me on many medications that did not work. The past year I started keeping track of my “flare ups”. They seemed to begin every 4-6 weeks. I told my GI doc, she wanted me to go have a food allergy test done. By then I was irritated. I knew it wasn’t a food allergy because I rarely eat anything different. I went to see my MD and told her about how I was keeping track. Told her I thought it was hormonal. She looked at what my GI doc had tried and suggested I go and have the food allergy test done as she recommended. I refused and still have not done it. I decided to go to an OBGYN (my former OBGYN past away and i had seen him for over 20 years) at a women’s specialist clinic. I explained to him EVERYTHING AND what had been done. He said that what I am describing was endometriosis. He also said I could have also had it when I had andenomyosis and it was never caught. He said my symptoms were cyclic and he did an ultrasound on my ovaries. He found a few cysts but those usually go away on their own. Next step is an exploratory laparoscopy for endometriosis. If there is any while in there he will clean me out. The date for this is next wednesday May 2, 2018. I am nervous but I am glad that he listened to me and is doing something about it. But what scares me, is that it isn’t endometriosis and my abdominal issues won’t be resolved.
I just had a total hysterectomy on march 28th 2017 which put me into surgical menopause. I had stage 4 endometriosis which was on my colon, bladder and spine….and huge cysts on each ovaries, when he opened me (abdominally) my ovaries were the size of grapefruits with melons hanging off of them he said. Last Friday he started me on hormone therapy I was having very bad depression and anxiety and he decided to start me on it a little sooner than he wanted but to help me emotionally. Now I’m afraid because I’m having some pelvic pain and cramping…. I don’t know if it’s in my head or is the endometriosis coming back??? I was told it lives and feeds off estrogen. I’m 30 years old so he said I have to take it because I’m so young. I’m also having problems peeing I feel like I have a Uti but I don’t and it just dribbles out then 5 minutes later I feel the need to pee again…. this has been the most frustrating thing ever in my life. I still have pain from my incision and my stomach hurts but they won’t give any more pain meds to me and now I’m feeling the cramping down low. Any suggestions?!?!?
Hi Danielle. This is so similar to my story. I am so surprised you were prescribed HR therapy as they know it causes regrowth. Have you gone to an excision specialist. I highly recommend you go back to the doctor especially if you are in pain. You know your body and when it is not right. Please follow up and let me know how it happens.
Since I started my periods at 13 they’ve always been heavy and painful. I’m 39 now and had my first and only child about a year and a half ago. I didn’t even think I could get pregnant so she was a surprise. Today I had a partial hysterectomy (ovaries were left) and the doctor found endometriosis everywhere. He said it looked like a bomb exploded and it was stage four. It was especially bad on my bladder and colon/rectum area. He removed it all and had a colorectal surgeon who happened to be in the OR area take a look. He thinks I should be okay so important hoping. Unlike most of you, the only real pain I had was during my period and even that was bearable. However I’m tired all the time and had lower back pain and iron deficiency issues. The only big problem I had that I think might have related to the endo was that I got a really bad UTI a few years back and even after my urine tested clean, I had a burning sensation that only went away when I was lying down or on my period in what felt like my urethra. I never could figure out why it stopped when those two things occurred but now I think it was the endo. It stopped on its own after about a year but then it came back in a somewhat lesser capacity before this surgery. I went to multiple gynecologists during that time but none ever even suggested endo. It’s frustrating and I really think that our complaints and issues frequently get looked over because we’re women.
I hope all of you find relief for your pain. It’s a horrible way to live.
Hi Melody!! Thank you so much for sharing your story and I hope you continue to heal and feel better after surgery.
It is common I think to disregard some of our symptoms as Endo because they mask other conditions. I am so glad you found relief. I hope they removed the Endo so you can get complete relief. Thanks again for sharing!!!
Sorry Daniela I spelled your name wrong on the response below!!! ❤️❤️❤️
Hi,im pabs, 34 years old and suffering from endo from 16 years old….now it become a big matter in my life..i want to remove all the causing organs…but after removing all if it is possible that pain will come again??cant believe..this is my only hope..please help
Hi!!! Please discuss your specific case with an endo specialist. I know it is a very painful condition but they have so many improved techniques for surgical removal by a trained surgeon. Sometimes a hysterectomy is not the best solution but everyone is different. I wish you all the best and please let me know how you make out.
I’m sorry. Join a support group. Some say best thing ever. Some say worse thing that ever happened to them. Try a homeopath, diet change and lose destresser. What works for me may not work for you. It takes time, lots of time and patience. A year later I’m doing much better.
I Had 1st surgery when I was 28th second one when I was 30 they wanted me to start on hormones I read about him and I decided not to doctor said I had one of the worst cases he’d ever seen I’m 68 now I haven’t taken hormones at all I always felt like that if I did then I might have gotten cancer cuz I really do believe that the hormonal therapy that they give us causes it I haven’t had any problems my breasts are sore though all the times throughout the month which I can understand sometimes I have trouble with energy but then again I’m 68 but when I was younger not having a hormones did not bother me at all
Thanks for sharing your experience. I completely agree I have not had hormones since I was 30 since the endo I came back while on them even though I had a complete hysterectomy at 28. I am now 52 and while I do struggle with some energy issues I am glad I choose not to take HR. Take care!!!
I was in your exact same position last fall. I am 31 and had a total hysterectomy. I went through the exact same thing..the leaking/dribbling did eventually stop. I couldn’t take the Hormone therapy because it seemed to bring my endo symptoms back in full swing. I didn’t take anything except natural supplements for about 6 months but the menopause kept getting worse and I was severely depressed. I’m on an anti depressant now and it has helped a ton.
This weather seems to be affecting me and I’m having terrible pain which feels like my old pain ( which is why I’m looking things up)
You are not alone and it’s not all in your head. ( I feel like I’m crazy too ) I thought getting the hysterectomy was supposed to take care of this.
Hello,
I am in the same boat as well. I have sealed with endo since I was 16. I went through many drs until up in Marquette MI I had a dr that finally agreed I had it. After many surgeries with removal of endo and then a partial and then a complete about 11years ago. I have pain that is the same pain as when I had endo for the last 7 years and of course I am told endo does not come back. It is so frustrating. I go to pain management and am on gabapentin and tramadol to help with the pain. I do have arthritis in my back and had neck/spine surgery last year but this pain is different . My pain dr agreed to get a MRI with and without to check and see if anything shows up. Has anyone had any luck with anything showing up? Also any help on where to go and who to contact in Florida. Thanks in advance.
Hi!!! How did the MRI go? I have never had any luck with endo showing up on any test!!! My endo doctor is in atlanta and he is excellent. You can contact the Center for Endo Care. They are excellent!! Good luck!!!
Rosemary my story is extremely similar to yours. I had a hysterectomy and my left ovary was left. It was suspected that I had endo for a long time until nothing helped for the pain anymore. That is when I had surgery and they found Stage 4. I am in pain on a daily basis and am very conflicted on having more surgeries. I am afraid the pain will get worse and that the adhesions caused by the surgery and endo will get worse. On the other hand I am tired of living on pain meds and hope that tomorrow will be a good day. I don’t have many. What doctors specialize in this? I am to a point that that I am willing to seek out treatment out of my state. I have tried pretty much everything. Any names and places would be appreciated.
Hi Heather!!! Sorry to hear you are having issues. I have found excellent care by several wonderful surgeons. The Center for Endometriosis care in Atlanta, GA is absolutely wonderful and has helped me a great deal. There is also the NY Endometriosis Center and Thomas Jefferson University Hospital Women’s Center in Philly. Please reach out to someone who specializes in Endo care it makes all the difference. Take care and keep me posted!!!
Well, I had the surgery in Aug of 2008. My pain has returned as well. It’s hurts extremely bad down there before and during my menstrual most of the time. I finally had a ultrasound done(inwhich they place the one inside) and received a call today stating that it had returned and thicker. So, I guess the answer would be yes. I have a biopsy Tues. I pray I get some relief and all is well. I pray you all get some relief soon. Midol maximum strength you all, is a life safer?
Hi Toni!! Did you have a hysterectomy? I would be so happy if Midol helped at all. I am on very strong pain killers and most time they don’t help!! Have you seen an endo doctor? Where do you live??
Good luck!!!
MY NAME Mekeba Weaver I’m a 41 yr old Women who has dad a hysterectomy which also didn’t help me. I’ve been on depo preva for 3yrs and yes it help some but not fully effective. My story is the same as yours I just don’t want pain anymore
WHT can I do?
Can you tell me if you had what I call a burning back feeling?? I had a hysterectomy a full hysterectomy ovaries plus appendix because of endometriosis and large cysts a couple weeks ago and before it I always complained about my lower back feeling like it was on fire and super tight… it’s almost unbearable.. my email is bp101810@gmail.com please let me know
Hi Betsy!! So sorry you are going through terrible pain. I would agree with you on the burning back feeling. I usually feel a burning feeling in my lower left abdomen and also around towards my back. I hope you find relief. Please see someone who specializes in endometriosis as the symptoms are different for everyone!
Hi betsy,I had complete hystoroctpmy beacause of stage 2 indomostrioses .that was cuople year.now I’m hurting my tailbone hurt Lille burning fire..
Hi Makeba!! Sorry to hear you are still in pain. I thought deprovera wasn’t effective if you had a hysterectomy?? Have you seen an endo specialist? I hope you get some relief please see a specialist.
My name is Amanda, I had my first surgery for Endometreosis when I was 14. It continued getting worse and worse. I also had the HPV virus with some cancer in my cervix. I had two cone biopsies and more laparoscopy’s. I went to Stanford and had a major surgery for 3 hours of removing endometreosis. Everything was stuck together. He also found I have the bladder disease.
My mother and I were going to many many doctors. My mother started her surgeries with endometreosis when she was 16 and had many surgeries and a complete hysterectomy at 30 after 3 children and high risk pregnancies that were not easy. I on the other hand ended up having a complete hysterectomy at 23 years old. I was bleeding internally and in a severe amount of pain. They had done everything they could. 7 weeks later my cuff broke open and got a serious infection throughout my body and had major surgery again and in the hospital for a week. Then broke open again 2 months later. I am now 27 and just had another laparoscopy. They again found endometreosis a lot of it!! Nobody at UCSF, Stanford etc. knows why? Anyone with a Dr. I could go to?
Hello
Ecsission surgery Is sadly fine by a hanful of doctors. They use tiny surgical sissies and cut the endometriosis lesions as well as adhesions in your body from prior surgeries. I’ve known a lady whom had this surgery and had been pain free over 20 years.
I am 39,I had one ovary left in me when my hysterectomy was done in March 2016. I read off a ebdi specialist doctir blog how important it is to keep an ovary of your able to.
I had lap surgery in August 2016 Then it all grew back where the gyne removed it. I was wondering why.
I went home did research, 97%of the time whe n docs burn endometriosis it comes back because a small amount left unseen in that area grows again.
I’m looking at a hospital in Boston they have a women’s hospital with cutting edge technology.
Here’s the link.
I prayer for all you endo sisters of mine.
My doc doesn’t want to remove my endometriosis lesions I have until June 2017. Heck no. I cant wait that long I suffer badly and go to pain management. Also, don’t let your doc tell you that you don’t need an endometrial cancer test you have every right to. These docs wait and wait. Better to get tested and know even for peace of mind.
Link to hospital it shows all the dictirs that do the sissir surgery lol excision is the proper name.
I saw the top specialist readied in Cali.
http://bostoncenterendometriosis.org/2012/07/16/adult-surgical-management/
Hi Christina!! Thanks for this link!! I am sure it will help many people. I have had success with several on the list!! Unfortunately many doctors are not that experienced in endo and surgery techniques.
Try homeopathy. It has helped me quite a bit. But it does take a while to be effective. It took me 2 years but now I can control my pain with taking just Panadol.
Hi Amanda!! Please contact doctor Sinervo at the center for Endometriosis Care!! Or the Center for Endo in NYC Dr K!! Please see a qualified endo excision specialist. Please keep us informed on your progress ❤️❤️❤️
How about progesterone? Or DIM? Has anyone tried either or both of these to assist in regulating their estrogen?
I started DIM and wondering the same! I am hopeful!
Hi Megan. I have used both progesterone artificial and natural and it didn’t do much for me. I wish you luck! Please let me know if you have any improvement.
I hate that others are going through this but it is a relief to know I am not the only one. After a lot of researching I have not been able to find a recommendation on an endo doctor in Pennsylvania or in close vicinity, does anyone have knowledge of any in the Pennsylvania area. Thanks in advance!
Hi Lisa!! I hope you feel better fast. I had several surgeries at Thomas Jefferson university hospital. They have a great team of doctors that specialize in endo. Good luck!!!
Hi Deborah!! First of all I hope you feel better fast. In my experience the endo is best dealt with if removed. I had a similar issue where even though I had a hysterectomy the endo was still found and had to be removed. Hopefully you can see an endo specialist that will help you! Good luck and I hope you feel better fast! ❤️❤️❤️ Rosemary
Thank you, I hope so too.
Just had surgery today to remove my gallbladder and the surgeon found quite a bit of endometriosis moving up into my abdomen. I previously had a complete hysterectomy with both ovaries removed in 2007 because of severe endometriosis and pain wasn’t controlled by birth control,or depo and only OxyContin seemed to work for pain. Has anyone had surgery to remove this and can it be cancerous? im in such pain on a daily basis and can’t walk very far without being in excruciating pain. Not sure what to do next as he didn’t remove any of it. I know this is an old post but I don’t want to go on OxyContin again and I definitely don’t want it to continue spreading.
I’m very concern I notice for the last couple of months it seems I having the same even worst pain on the same side before I had my total hysterectomy in 2006 I notice it’s always around the time I should be getting my period I’m only 42 now what should I do or where do I start to begin
So happy to have found other people with the same issues. I am afraid after having a hysterectomy leaving only one ovary that endo is back. Now wrapped around my colon and has left me believing it is partially obstructing my bowel. Now I have to go back to another doctor to discuss what to do with this continuing issue. Surgery was only about 18 months ago. The pain started within one year of surgery. I also have two prolapse repairs done at the same time and they have both failed. I’m very down about all of this. I’ve seen numerous doctors not believing that this could be the work of endo. All have done tests and found nothing. The only answer left is endo 🙁 So now I feel I must want to have more surgery which I absolutely do not want, but if it’s affecting my bowels like it is and has caused even more pain that before, I feel there must not be another choice. The very sad thing is that from all the research I’ve done it appears there is not really a whole lot of options other than surgery. Removing the endo and I wonder if having the last ovary removed as well. I’ve just started working after being an at home mother and this is literally ruining my re-introduction in the working world. I see my doctor who did my last lap along with my urogyno doc who did my prolapses to see what else to do since my issues seem to have gotten far worse. Thanks for reading.
I’m so glad to have found a forum of women going through a similar situation as me. I’m 33yrs old and just had a complete hysterectomy (no children) this Februrary 2016. In 2013 after trying to get pregnant for 4 years I was diagnosed with Endometriosis and had two grapefruit sized cysts from each ovary laparoscopically. I was on Depo Lupron for a year and it seemed to keep the endo somewhat at bay. I was then taken off the treatment in order to try to get pregnant and my endo grew back slowly but with force. I then had an opherectomy on my right side as well as endo removal performed by my regular OBGYN in August 2015. 3 months later I had a follow up ultrasound and we found that the endo grew back and I had another cyst on my remaining ovary the size of a grapefruit again. At this point my OBGYN recommended I get a complete hysterectomy and also referred me to an encologist, he explained that because we does this surgery for various reasons all of the time that he would be better capable at removing as much endo at the time of the hysterectomy as possible. I just had my follow up appointment after my surgery and the dr said my endo was extreme it completely covered my uterus and destroyed my ovary. It fused my cyst to my pelvic floor and rectum. He is quite positive that I can keep the endo at bay by obstaining from hormone treatment for at least a year, giving the endo time to die off (endo can die off so long as you don’t feed it) he also recommends acupuncture to assist with helping the side effects of not being on a hormone treatment. Due to the fact that I’m so young I will have to go on a hormone treatment of sorts to prevent other health issues. So now you know my story I have a question 🙂
Does anyone know what foods endo thrives on. By reading the above I’m confused if the endo diet is for people with active endo and have pain symptoms or if the diet is to help keep it from growing or both?
Also any other advise is always welcome, I lost my mom 2 weeks after my August surgery and don’t really have anyone that has been through it that can help guide me through it all, it’s extremely overwhelming.
Positive healing vibes to all!!!
Marissa O 🙂
Marissa, you asked what FOODS endometriosis thrives on. Well, I had a total hysterectomy a few years ago, and that seemed to be the end of the endometriosis. Then I just took prednisone for bronchitis, and I swear it seems like the endometriosis is back!!! I’m hoping as the prednisone works its way through my system, it will subside. Weird, huh??
Most farmed animal products have high levels of oestrogen in them
WOW!! Reading these does not make me feel better but I no longer feel alone. I’ve had 5 surgeries then in 2014 had a partial hysterectomy and less than a year later had to have ovaries removed. I am now having bladder issues and rectal bleeding. I am in pain 24/7…although times are not as bad as others. And to top it all off…my menopause symptons are awful and HRT is not helping. I am 38, unable to have children and STILL suffering! I do have an appointment at John Hopkins in Baltimore next month but unfortunately trying not to get my hopes up to only be disappointed again. Good Luck to ALL of us!!!
Hi Angela! I completely understand your pain and frustration. Please continue to see your medical doctor and hopefully you can get some relief. It took me a long time to find a doctor that was willing to listen and react to the pain I had. I have been to John Hopkins and they are excellent. I hope you find some relief. Keep us posted. Have you tried any alternative therapy, like heat or acupuncture, sometimes it helps at least for a little while? Good luck to you!
Hi Alice! I am sorry you are not feeling relief. If you are not feeling good I would continue to see the doctor or get another doc to review the pictures and op report. It can take a while of complete rest to feel better especially if you had a lot of endo removed along with the hysterectomy. Please don’t ignore your symptoms and I hope you find relief soon! Rosemary
Hi Rosemary,
I had a total hysterectomy 4 years ago. I have had 5 surgery’s since then.
I see an Oncologist they specialize more in this type of endo. I have 4th stage aggressive endometriosis. It is a never ending disease. Once it is in your body it is very hard to get rid of as my Oncologist said to me. It acts as a cancer but it is not cancer even though cancers cells maybe high during the time the endometriosis grows. My endometriosis is located in both Pelvic and in the colon it has not grown yet in the bladder. I understand your frustration perhaps you may need to see an Oncologist instead of a GYN.
I know that my Oncologist has been a big help to me.
Hope you feel better and don’t ignore your symptoms persist or find yourself and Oncologist that deals with Endometriosis. Feel better soon!
Hi Maria! Thanks for the information! I have considered an oncologist and I am weighing several options. It is a relentless disease. I had another surgery this past July for more adhesions. No active endo however very thick adhesions. Good luck to you I hope you are seeing relief.
Hi Rosemary,
Recently had total abdominal hysterectomy BSO for stage 4 endo in November 2014, just 9 weeks ago, and I feel as sick and if not more than before my surgery. Fatigue, debilitating pelvic and low back pain, nausea, and general ill feeling. Is it possible to be so sick so soon? My doctor will not acknowledge my pain, and tells me see you in 1 year.
Nope and welcome to surgical menopause. What you are feeling is like a car crash. You’re ovaries or gonads (female endocrine system) has been removed. What you are feeling in a polite terminology – just as much as I was boggled why I felt so bad too and very ill after my surgery – is “female castration”. This is what it feels like to be castrated; and completely and slowly deprived of your female hormones. I feel awful for you. You will never recover – ever. If you are young I would highly recommend higher doses of estrogen I was told around 180-300 is ideal for YOUNGER woman. And get your estrogen checked via your doctor it is vital for your health.
Now I would suggest reading and learning the truth about surgical menopause here;
http://surmeno.blogspot.com/search/label/fatigue
The VITAL information that your doctor or gyno won’t tell you. Peace and love to you.
Be prepared for at least two to five years for full recovery. UK doctors are far more “realistic” than the “phony” american doctors 12 week theory. You are FOREVER going to experience the effects of surgical menopause. Which will never go away and is only managed by the ERT. You must stay on ERT for your health its vital. Or should we say “permanent estrogen deficiency” as one brilliant UK gyno told me; and he was good. These are the consequneces of removing part of the endocrin system. I believe that all gynos should be held fully accountable for the dysruption of woman’s lives. And re-learn the correct way to heal woman.
Hi Jolene…. yes, the estradiol could be feeding the endometriosis. I started HRT 2 years ago after having my second ovary removed, uterus and first ovary had been removed in separate surgeries already. My doc is fantastic and warned me that estradiol can feed the endo, so she added progesterone to slow it down. That wasn’t enough so I stopped taking both to try to kill the endo… I felt better in just a matter of weeks, ’till the hot flashes hit me. LOL I’ve been off the HRT for 4 months now and am feeling much better. I will go back on in a couple months, but am trying to stick it out despite the hot flashes ‘cuz ditching the pain is worth it to me. Do your research for doctors… there are some that are up to date on the newest research and they are priceless.
Hi Shauna! I am so sorry that you have had such a hard time. I understand what you are feeling and it is so frustrating. Please don’t doubt your feelings. It is very important that you find an endo expert that will listen and read your records. Please don’t ignore the pain there are people out there that can help you. I hope you feel better soon! Take care of yourself.
Hi Barbara. The Center for Endometriosis Care in Atlanta is a very comprehensive place that evaluates all the issues you are experiencing. They are very caring and the surgeons are excellent. They have done two of my surgeries and I have gotten the most relief from those surgeries. I would highly recommend getting in touch with an expert. There is help out there. It can be frustrating however it is so worth it when you find a good caregiver. I wish you all the best!
mea 2008, pain gone until 2012 = had hysterectomy. pain gone until NOW. are ovaries next? each time they say they see little endo growth. well, that endo growth causes major pain and distress.
god help me. atlanta is 3 hours away. What can they do there?
This is very helpful to know that I am not the only one experiencing this.
I have dealt with pain on and off since I was about 15 years old. I would visit the ER 2-4 times a year for several years. They would tell me its small cysts or one had ruptured. At one point when I was about 17 they had convinced my parents I was there just for the drugs.
It wasn’t until I was about 20 that an ER doctor found a softball sized cyst and it was surgically removed 3 days later. And a full pelvic was was performed. My parents felt bad about believing it was for drugs all these years. At that time I was not familiar with any of this, so I didn’t really ask questions before or after the procedure.
Exactly 2 years later I found myself in the ER several times and referred to a surgical OBGYN with years of experience. I went and saw him and was so relieved that he was the first person to really listen to how I was feeling and put me first. He said that I know my body better than anyone.
A week later I was to have endometriosis removed along with a small cyst. however it turned in to an exploratory surgery. The following week I had a hystorectomy with a bilateral oopharectomy. I WAS ONLY 24.
I recovered and within 6 months was back in the operating room having a bladder sling implanted because my bladder fell. NO I HAVE NEVER HAD KIDS.
Things were great for another 18 months. Exactly 2 years after hystorectomy and 4 years after first surgery an 11cm Cyst was found on the lower right quadrant, where an over SHOULD be. I was so confused, I didn’t have anything left for this to be there. Yet I found out there is something called ovarian reminent syndrome, very rare, but yep I have it. Cells left behind from ovaries can regenerate themselves. Yay, 3 weeks later I was having another surgery. Intended to be laproscopic, however after opening me up they relized the cyst was too big and had to perform a laparotomy. This was January 2014. I did have complications but nothing relating to female parts.
This was 9 months ago and just recently started having severe pain in my right side again. Im told it is nothing, probably in my head by my mom and some other doctors. Im just lost.
Hi Jolene! I am sorry you are having pain again and I know how frustrating that can be. Please keep your appointment in December and in the mean time try to find an endometriosis specialist. The only success I have had at relieving the pain and finding the endo after hysterectomy was a laparoscopy with a pathology report showing the removed areas were endo. I know it is frustrating and please don’t give up on finding help. I had to stop taking all estrogen/HRT or hormone therapy because it made any leftover endo flare up and grow Please mention that to your doctor. Good luck!
Oh my gosh Rosemary,thank you so much for posting this! I had my hysterectomy March 2012 and I’ve just recently gotten sick again. I think it’s the endo,and/or adhesions. But the stupid dr’s keep saying endo doesn’t come back after hysterectomy. I’m have an appointment with Mayo Clinic in Minnesota in December, but i don’t know what to do until then. I’m so sick. The pain, fatigue,nausea,and general ill feeling, just like before is all back. It’s getting worse day by day. How do they find the endo now, I’ve had endoscopy, sigmoidoscopy,colonoscopy,and ct scan trying to figure my illness out but they found nothing. How do we find it so they can fix it? I am on estradiol,this is bad right?
I too have been told endometriosis cannot come back after my hysterectomy. I’ve been miserable for almost a year. It’s helpful to know I’m not alone in this battle.
Hi Jolene, I’m wondering if you were able to get help at Mayo. I’ve been told by 14 GYN’s that Endo cannot regrow after a hysterectomy. I had a radical 9 years ago and continue to suffer monthly pain, and since September 2015, have unexplained nerve pain down both front, medical and lateral thighs and hips. Back, vertebra, disc and hips have been ruled out, along with all GI possibilities. If you could provide any insight, I would be very grateful. Thank you.
Hi Lori! I definitely had endo regrow after hysterectomy and I have the pathology report that there was active endo 10 yrs after my hysterectomy so it happens. Have you had any laparoscopy after the hysterectomy or taken any HRT as that would feed any endo left in the cavity as in my case. I hope you are able to find a group of doctors to help you. Depending on where you live there are places that can help you. Good luck!
Dear Janet. Please find an endometriosis doctor. There are great docs in NYC, Atlanta and Florida. You need a specialist. It is a difficult struggle but it is NOT in your head! This is a disease that needs special care! Please don’t give up and don’t accept pain as normal. Try the center for endometriosis in Atlanta!
Rosemary, I noticed you mentioned a great Endometriosis doctor in Florida. I was hoping you could share the info for that doctor with me because I’m fairly new to Florida. I’m 33 and have had multiple surgeries, starting at age 22, for recurrent endometriosis as well as adenomyosis(endometriosis in the wall of the uterus)and of course adhesions due to all the surgeries. I also have Interstitial Cystitis, which used to be called Painful Bladder Syndrome. Every time I had surgery for Endo, the doctor would “burn” or cut(depending on the doctor doing the surgery)away the endometrial implants they could see and they would also remove adhesions. With each surgery I had, I would wake up with one less reproductive organ, until all I have now is my cervix. Like many of the stories I’ve read in this forum, I would usually get at least a few months of relief from my pain after surgery, but then the pain would return. I’ve been to many doctors and tried many treatments to no avail. I’ve had doctors that have been wonderful and I’ve had doctors that not only treated me terribly, but also tended to have less knowledge about Endometriosis than I did. It gets so exhausting to live in pain and have your life revolve around appointments, tests, treatments, etc. I finally reached a point where I just stopped seeking medical help. It was too hard to get my hopes up each time I’d see a new doctor or try a new treatment only to be let down when I didn’t get relief from my pain. I’ve recently decided I’m ready to start seeking a specialist again and see if I can find someone who might be able to offer something I haven’t tried before that might help me. I now live in Florida, so I am hoping to find a doctor here who actually understands this disease. I have to say that I was surprised to read some of the women in this forum mention seeing an Endometriosis Oncologist. I’ve never heard of this before, but I’m interested in learning more. If anyone can tell me what they know about this or any experiences they’ve had with an Endo Oncologist, I’d really appreciate it. I am greatful for all the women in this forum that share their experiences with this awful disease. I think it’s a little easier to deal with it when you know there are other people who can understand what you’re going through. I pray that one day there will be a cure for Endometriosis. My sincere thanks to all of you!!
I had a complete total hysterectomy when I was 39 years old due to endometriosis. The doctors mis-diagnosed me and said it was all in my head only to find it throughout my pelvic cavity with my bladder stuck to my uteris which was turned backwards. I only weighed 79 pounds and was bleeding profusely when they finally put me in the hospital with my complaints – the doc saying “There’s nothing wrong with you, but you keep complaining so we’ll do a laparoscopy and you can go to work after it.” I am terribly afraid of doctors now. I have adhesions and my bladder hurts every single day! I don’t know where to turn. I am now 68 years old. Any advice? Thanks, Janet
I have 8 surgeries and a complete hysterectomy for my endrometriosis. I have chronic pain on a daily basis, and my doctor\surgeon is at a loss. He cant figure out why I have pain. I want a normal life back.
Hi Jamie! I totally understand what you are going through! You are very young and please seek out several opinions before getting any partial hysterectomy. I would highly recommend the Center for Endometriosis Care in Atlanta or other well qualified reproductive endocrinologists in your area who have had experience with Endo. It is so important to remove the lesions properly. Good luck to you!
Thank you for sharing. I found out I had Endo at 14 and have had two surgeries so far. My pain also returned in about 6 months. I am 18 now and the doctors said i will probably have to have a partial hysterectomy in a few years because my left side is bad. I hope people learn from this and what some women go through on a daily basis due to Endometriosis.
Thanks Di! It is a struggle and more awareness and discussions are needed! There are many amazing people who need help! Thanks Rosemary
Well said Rosemary
This will give many girls hope that doctors do not know every thing & they know pain is telling them something is wrong.
I hate endo but I love my endo sisters
Di xx
I’ve been suffering with ending for almost six years now.The pain is excruciating . I can’t afford the medical insurance they want 800 dollars a month just for me because I am pre-existing conditions besides that I need to put 3 thousands American dollars out of pocket before I even get an exon organ I can’t sleep I can’t eat I can’t shower is horrible now I gotta leave my country to feel better because Obama haven’t made it easier for any of us….he’s killing us..
I am a United Stated citizen born in Puerto Rico and raised in new york city daugther of Dominican parents that immigrated to this country in the sixties and the fact that I got to leave my country to be able to get help somewhere in another country is pathetic but meanwhile the government isues Medicaid cards food stamps and housing to total strangers from another country how about us this is the second time I have to leave my country yodel better…
GOD HELP u s ALL…
How about the people of the United States of America do we count, no one ever says a word about since we have become pussies and faggots
Hi Rosemary, how much or maybe just an estimate, is the cost for this endo excision in Atlanta? I don’t think Medicaid covers this kind of surgery.