At the young age of 19, I was diagnosed with an incurable disease: endometriosis. During my adolescent years, from the age of 13 on, I suffered with debilitating periods every month, and eventually I had ovary pain even when I was not on my menses. My first gynecologist first suggested that I try birth control pills to see if my pain would decrease. She made it seem like it was normal for women to be in so much pain during their period.
When that did not help, we decided that it was time to do a laparoscopic surgery to see if I had endometriosis, since it does run in my family. I was 19 years old. During that surgery, I was found to have endometriosis–she removed it all but a little bit that was on my ovary. I also had a cyst drained. A few months later, the pain was back. My doctor said there was nothing else she could do, so I was forced to find another gynecologist.
Repeated Surgeries, Medications, and Natural Methods with No Relief from Endometriosis
Since my first laparoscopy in 2010, I have had multiple other surgeries. I had laparoscopic surgery for endometriosis in 2012 and 2013. During my surgery in 2013 I also had my appendix removed to prevent disease from growing on it or having it rupture. The surgeon that performed this surgery is an endometriosis specialist. I had to leave pharmacy school twice because the pain was so unbearable.
I have tried almost every birth control pill there is on the market, Lupron, a gluten-free/dairy-free diet, physical therapy for pelvic floor spasms, heating pads, over the counter pain medications, and narcotics as well as Xanax, Cymbalta, Celebrex, Meloxicam, and Ponstel to see if any of these things would decrease my pain and the disease. I also had a colonoscopy done at 20 years old, a CT scan, an MRI, and was tested for interstitial cystitis, a bladder disease that is often found in patients with endometriosis. These procedures did not show anything out of the ordinary.
When I had laparoscopic surgery, I would be pain free for a few months, but then the pain would return, most likely because my body was estrogen dominant. My blood work always came back fine other than my Vitamin D levels were always low. Over the course of five years I went to at least sixteen different doctors trying to find something that would end my pain. However, many of the doctors I went to did not know what else to do because the disease is so complex. It was after I put my body through menopause twice with Lupron, that I decided it was time to have a hysterectomy.
My Hysterectomy at Age 23
One of the doctors I was seeing was supposed to do my hysterectomy, but changed her mind at the last minute because she decided she wanted me to have a uterine nerve ablation instead, which could cause my uterus to prolapse. I did not want to take the chance of that; I just wanted everything removed. She told me she would not do it without me seeing a therapist because I was so young. Once again, I had to find another doctor who would perform the surgery. I met with a new doctor and told him everything I had already been through, and he agreed I had tried everything and was old enough to make my own decisions, so we went through with the surgery.
Hysterectomy did not Cure Me
I was hoping after I had a hysterectomy that would be the end of my struggles, but it was not. A hysterectomy is not a cure and if the doctor does not remove all of the disease while he is operating, the disease can still grow. I had to have another surgery to remove endometriosis at the beginning of 2015, with a different endometriosis specialist than in 2013.
Right now, I am pain free. I am currently on bio-identical hormones to help me sleep and decrease my stress. In just a few months, I will be able to start my second quarter of pharmacy school and hopefully this time will be successful in finishing. I still struggle with my decision to have a hysterectomy because I have always wanted to have kids, but I know I can still have children; it will just be by a different route. I have decided to use what I have been through to help others, and I hope that by putting my story out there that we will be one step closer to finding a cure.
It’s nice to hear that you’re pain free now. I too want to choose hysterectomy even if it’s not a cure. Becauseo when I’m in pain all I can think about is getting rid of that stabbing pain no matter what. Thanks for sharing your story Samantha. Wish you a blessed life ahead. Take care!
Thank you so much, Gayatri! I hope you are able to find some relief soon. If you choose to have a hysterectomy, make sure your surgeon is able to excise all of the disease. If they don’t, the endometriosis that is still left in your body can continue to grow and cause pain. Sending you hugs and praying for you!
Hi Samantha:
I wondered if I could connect with you through e-mail. I have a few questions regarding pelvic physical therapy for endometriosis, along with a few others I’d rather keep private. Thank you!
Hi Jane!
Yes, of course. My email address is skbowick@yahoo.com. I also have a Facebook Account if you would like to message me on there. I look forward to talking with you!
Samantha
Thank you so much for sharing your journey. It almost seems identical to mine. It all began for me at 15 and my life was never the same again. I’ve had over 8 laporscopies to try to remove as much endometriosis as possible and I’ve had ovarian torsion and hemhorgaic cyst that was leaking blood in my whole abdomen. My doctor said it was a must if we wanted to have babies to start trying right away so we had 2 miscarriages and then we could not conceive for over a year so my doc recommended IVF because my endometriosis was still causing me so much pain. We did IVF and on the first round my ovary twisted and i had to have emergency surgery and we lost that baby and then we did it one more time and we got our MIRACLE baby boy!!!! So now I am 9 months postpartum and have already had two more surgeries for my endo pain and one surgery to remove my right ovary because a lot of my pain was coming directly from there. But now two months out from that surgery I am in sooo much pain almost everyday and I am too my breaking point. I just want to be the best wife and mother I can be… but being in this much pain all the time is making it so hard and it’s breaking my heart. I am currently 23 and really considering a full hysterectomy. I don’t have anymore options at this point.
Hi Jordyn,
You’re welcome, thank you for your comment! I’m so sorry to hear about your journey with endometriosis. It is a horrible disease. I’m glad you were able to have your miracle baby! I understand being to your breaking point and not having any other options. Make sure to do research if you haven’t already on having a hysterectomy before deciding. Since having mine, I had to have a fifth surgery to remove endometriosis by an endometriosis specialist who uses wide excision because my doctor who did my hysterectomy did not remove all of the disease. I have also had my gallbladder and scar tissue removed in a sixth surgery in 2016. I was also diagnosed with osteoporosis, but my doctors aren’t sure why I have it at my age; it could be from Lupron, low vitamin D, and/or having a hysterectomy. I am on an estrogen patch since I had both ovaries removed during my hysterectomy. I know how debilitating the pain is and just wanting to be able to move past it and on with your life. I have been able to do things I never thought I would be able to because of the pain like riding a horse! I’ll be praying for you and wish you luck in making the decision. I wish we had better options for us to choose in treating endometriosis or even a cure.
I just had my first laparoscopy two weeks ago. Like you, it runs in my family and I have been suffering pretty much since my first period began. Well, my doctor found found stage IV endometriosis and told me that she highly recommends a total hysterectomy because it has invaded all of my reproductive organs, as well as my rectum and bowels. I’m scheduled for the beginning of November. I am so glad I found this. People that have had hysterectomies in their 30’s and 40’s keep saying they can fully relate, but they can’t. I am only 23. I worry about what this will do to me. I’m afraid of adverse sided effects of artificial hormones. I worry about what my health will be like in years to come without the natural estrogen and progesterone. My doctor does not want to keep my ovaries because of how aggressive the endometriosis has become. I am incredibly grateful that I met my husband at 17, we were/still are crazy about one another and knew we wanted to marry, and have three kids close in age. I’m a stay at-home mom and was fortunate enough to have had all three of my babies already. Everything truly does happen for a reason. I feel like people assume I shouldn’t be bothered because I already have my children, but it’s so inaccurate. This is the hardest thing I’ve ever had to deal with. I’m also nervous for the surgery itself. I keep worrying about something going wrong and how my recovery will be, as well as it possibly coming back. I guess it’s just one day at a time. I’ll be thinking about you and I’m happy to hear that you are finally pain free!
Hi Ashana!
Thank you so much for your kind words and for sharing your story. I am so sorry for all of the pain you have been and are going through. I hope you can find some relief soon. I am so glad you were able to have children despite endometriosis. I completely understand this being the hardest thing you have been through. I think it is a hard decision to make whether you have kids or not. We are so young to be having to deal with this and make these kinds of decisions. It is life changing and can be hard for other people to see it that way unless they have been through it. I am always here if you need to talk. I’ll be thinking about you and your upcoming surgery. Sending hugs.
Hi Allison,
I am so sorry you have not been able to have any relief yet. For me, the pain was so much worse than any of the side effects I am going through now like hot flashes. You know your body better than anyone else and know what you can tolerate. I had my hysterectomy in 2014 and did have to have another surgery with an endometriosis specialist in 2015 because the previous doctor did not remove all of the disease so it continued to grow. I hope you find a doctor that will agree with whatever treatment option you decide to do.
Hi Joanne,
I am so sorry to hear about your daughter. I pray that she is able to find pain relief soon and can go to college.
Hi Jenny,
I am so sorry about everything you have been through. The last specialist I went to is Dr. Sinervo in Atlanta, GA and I love him. He is a great doctor and really cares about his patients. I hope you get some relief soon.
Hi Philippa,
Thank you for providing that information. Unfortunately a hysterectomy is not a cure. I hope one day soon we can say there is a cure for endometriosis.
Sending hugs and prayers to you all. Thank you so much for your support.
Jenny, there is a list of excision surgeons on Nancy’s Nook facebook page that I mentioned in my other comment. There are three in Phoenix, AZ that would probably be the closest to you. Dr. Nita Desai, Dr. Michael Hibner, and Dr. Paul Matgibay.
Hi Alison and Joanne, I just wanted to provide you both with a great resource for finding better care for endometriosis. A retired nurse named Nancy Petersen, who started the first dedicated endometriosis clinic in the US along with Dr. David Redwine, now runs a facebook page called Nancy’s Nook: https://www.facebook.com/groups/418136991574617/. There is a list of doctors on that page who are doing the best excision surgery in the country and who have much better patient outcomes than the average gynecologist. Those doctors will also be better sources of advice on various medical options. There are a lot of options that work better than hysterectomy, because as you can see, continued pain after hysterectomy, unfortunately, is quite common. There are some good sources of information on natural methods that help such as this article that I wrote: http://interactive.alive.com/july-august-2014/endometriosis/#. Using a combination of natural and medical/surgical approaches often works best. If the endometriosis has been completely excised and pain persists, there are other sources of pelvic pain that should be investigated, as outlined in this article: http://www.hormonesmatter.com/pain-endometriosis-excision-surgery/. Hysterectomy does not treat any of those potential pain generators except for adenomyosis, so in my opinion before having a hysterectomy it is important to rule out all of the other potential causes of pain.
Samantha, I am from Las Vegas and my story is a duplicate of yours, except my endo has come back. I was diagnosed at 25 after being told I had most likely had this disease since I was 10 or 11 yrs old and of course, was misdiagnosed. Right after my hysterectomy in 2001, my doctor left the state. I found another doctor who prescribed hormones, particularly Premarin, which I was on until 2012. I found out from a different doctor that Estrogen can escalate the growth of the cells I had left. I have since been looking for a doctor or specialist in the disease and have gone through well over 27 OB/GYNs & GYNs here in Vegas. None of these doctors here know anything about the disease. They have only treated Stages 1 & 2 and are not willing to listen to me now that I have had a hysterectomy and am back in severe pain. I would like to know if you are able to provide me with the name of the endometriosis specialist you are seeing. I am not sure what state your are in, but I really need help and am willing to travel.
Hi Samantha I have just read your story my daughter who is turning 18 this year is going tree this since she was 13 and I am attending a gynecoligst and different birth control pills and pain relife and find she is restricted in choice for college and missed a lot of senior school I look forward to hearing your progress
Hello my name is allison and I am 20 years old and have had this since I was 14 but not diagnosed till 16 because that was my first surgery. I have been debating a hysterectomy for about a year or two now because of the pain I have done everything you have done above and I condone how brave you have been. It’s fucking hard. I would not want to put this on anyone. I was wondering thoug if you had any pain so far like taking medicine for sleep and others are probably not what you want but being in pain is worse so is it worth it. No doctor will perform the surgery yet because I’m too young but it’s like the only option left!
There are real natural options that has worked for others. Research online vitalzym and progesterone and vitex angus cactus and essential oils like frankincense, thyme, sage. You have to attack it at all angles to win. God created natural enzymes in plants that are stronger than any man made medicine. He created us, he cam cure us. Pray to God, there is only one true God (the trinity). God have mercy amd bless us who suffer from fibroid tumors.
I very strongly agree! I was also convinced to have a hysterectomy because of the pain I was experiencing. It was against my better judgement but the pain was so excruciating I couldn’t even go to work. Well, after removing my left ovary and uterus the pain still continued, I eve n went and requested an. Ultrasound to see if they took the correct ovary. The doctor said it was ghost pains! It has been 5 years and continue to get unbearable pain and have to take numerous amounts of pain killers just so I can get out of bed. I thought to myself I can’t continue with this the amount of pain killers I have to take are going to have affects on my liver and kidneys. I decided to try Young Living Geranium, the essential oil, mixed with coconut oiland rub it on the area 2-3 times a day. So far so good! I am pain free!
Hi Nicole,
I am so sorry to hear about the pain you have experience and glad to hear that essential oils are working for you. I hope you are doing well.
Samantha
Hi Trina,
Yes, you are so right! I hope you are doing well.
Samantha