I probably have endometriosis, but there’s only one real way to be sure: a laparoscopy. In a few weeks, I will undergo this minor surgical procedure and finally get a diagnosis for the disease I most likely have.
The symptoms started in late November: a strong gnawing pain in my lower right abdomen that worsened over a week. I could stand up, but not walk normally. When I went to my primary care doctor, he sent me to the ER. There, they performed a CT scan and a trans-vaginal ultrasound. All they found was excess fluid. “It’s a ruptured ovarian cyst,” the ER doc said. “It’s very common in women in their mid- to late twenties. Just rest for three days, take some NSAIDs, and see your gynecologist.”
My gyno did a pelvic exam and found that I was tender and sore over my right ovary and in terrible pain when he pressed on my left ovary. Not only that, but the ligaments near the back of my uterus were tender too. He asked me a very long list of questions that I was surprised to hear. “Have your periods been getting more painful? Has intercourse become more painful? What has your menstrual health looked like over the past six months? Has anyone in your family been diagnosed with endometriosis?”
I answered that my periods had recently become irregular and more painful, but nothing too unusual. I thought that intercourse had been normal, but my partner chipped in: “No, actually, there have been times when intercourse has been very painful for you.” I had simply dismissed it as I’d read that hormonal fluctuations are normal as you near 30, and that your periods generally become heavier and sometimes more painful. My gyno told me that this is called “normalizing behavior”: because something out of the ordinary doesn’t strike us as a medical problem, we simply dismiss it and forget it even happened, much less associate it with illness. Also, members of my family did have endometriosis.
He told me I’d have to have a CT scan done to check for ovarian cysts, and that we had to rule out polycystic ovarian syndrome and pelvic inflammatory disease, but it was likely I’d developed endometriosis later than usual. He prescribed a course of progestin to reduce the swelling of the scar tissue and adhesions and then told me to start extended-cycle birth control (where you only menstruate every three months).
I was hoping to have a quick diagnosis and be back to normal in a few weeks, but it turned out to be anything but short and simple to find a diagnosis and a treatment plan.
Progestin was very hard on me physically and emotionally. I vomited constantly, even waking up in the middle of the night to do so. I grew a stringy white beard and a brown mustache (these fell out when I stopped the medication). I found myself sobbing at cat food commercials and songs I previously enjoyed. I started feeling very cold and very warm at random intervals, and thought that my partner was messing with the thermostat. These, apparently, are the joys of hot flashes. I got vertigo and found myself stumbling dizzily to the kitchen or bathroom. With each dose, I became more emotionally weird. It was a short course of hormone replacement therapy, and it did in fact reduce the pelvic pain, but I’m terrified to ever experience that kind of emotional instability again.
I started the extended-course birth control and felt better each day that progestin left my system. There were new symptoms, though, and they continued to worsen over the next three months. I felt a strange tugging sensation in the front of my pelvis when I would bend over. It’s hard to describe, but it reached a point where I couldn’t bend over to take out the trash or put on shoes. It became horrifyingly painful to use the restroom in any way. My abdomen swelled, not too much, but enough that sweatpants and pajamas were my only option for pants. I was horribly constipated, probably because going to the bathroom hurt so much that I’d stopped eating normally.
Within two weeks, I couldn’t stand or walk without assistance. Everything between my ribs and upper thighs was a mass of cramping pain. I was hoping that the birth control would reduce what was possibly endometrial tissue enough that I could walk, but one night I was in so much intense pain, now on the left side, that I begged my partner to take me to the hospital. “Something feels like it’s going to burst,” I said. I had a fever and diarrhea and a stabbing pain on the left side. The CT came back perfectly normal. The ER doc said, “There’s nothing seriously wrong with you. You probably just have a bit of stomach flu, but see a gastroenterologist just in case.”
All in all, I’ve had two CT scans without contrast, two CT scans with contrast, five rounds of blood tests, one stool sample, two trans-vaginal ultrasounds, two ER visits, six specialist visits, and a colonoscopy. The specialists ruled out polycystic ovarian syndrome, liver or gallbladder problems, diverticulitis, chronic appendicitis, cancer, and mononucleosis. Everything came back normal except for the colonoscopy, and I’m currently waiting for the diagnostic laparoscopy.
I’ve been very lucky to have specialists that took my complaints very seriously. After three months with every test returning normal, I was starting to feel like it might all be in my head. All the tests come back normal, but I’m in horrible pain! I can’t even stand up by myself anymore! There has to be something in there, why can’t they find it? What if they think I’m just seeking painkillers? They have to know that I’m not making it up! And, most of all: Why is this taking so long? I’ve been sick for three months, and I seem to be getting worse. I can’t take another day of this pain.
My gastroenterologist thought I might have diverticulitis and put me on antibiotics and a liquid diet. He scheduled a CT with contrast. The scan came back normal, but the liquid diet really did help with the bowel pain. He then wanted to rule out chronic appendicitis and put me on a very strict diet with regular use of laxatives and scheduled a colonoscopy. At that point, I had a very swollen abdomen, would cry when anyone pressed upon it, had mucus in my stool, and had strong cramps throughout my abdomen and pelvis when I was full. I was starting to lose control over my bowel movements. I still couldn’t walk or stand on my own.
They did an exam moments before the colonoscopy and told me I might need my appendix removed or a colon resection. There was a chance I would wake up in a hospital, but not to worry. They had done this procedure many times, and I was in good hands. I went under the anesthesia utterly terrified.
When I woke up, they told me they had found a large growth in my colon. They had sent a tissue sample out for a biopsy which would return in around three weeks, but not to worry. My appendix was fine. I had no infection or abscesses. Just take it easy and drink a lot of fluids.
Two weeks later, the biopsy returned. The colon growth was completely benign, and they had cauterized its blood supply during the colonoscopy. It would wither and pass all on its own. My gastroenterologist said it might grow back, but not to worry. He’s fairly convinced, although we have to wait for the laparoscopy, that the growth is the result of endometrial implants and scar tissue putting pressure on my colon. He’s fairly sure that the laparoscopy will show that I have advanced endometriosis, and the implants and scar tissue have spread very far up my abdominal cavity, causing irritable bowel disease and the colon growth. He told me to follow a special diet, take laxatives as prescribed, drink plenty of fluids and above all, to calm down. Breathe. Relax. Know that I have good doctors and I will be OK.
I’ve discovered a few things along this bumpy diagnostic road. I’m allergic to all painkillers, so other pain solutions and stress management are vital. Warm baths, walking even though it hurts, and eating a vegan diet with lots of water and laxatives as prescribed are very important. I’ve been encouraged by my doctor to apply for medical marijuana use, but that’s a whole other story.
Stress reduction is the most important factor in my life right now. The pain and uncertainty of being diagnosed with this disease are very hard to experience, and also hard on family, friends, and romantic partners. Find music you think is soothing. Make sure you have some time in a park or near plant or animal life. Try meditation or yogic breathing if that’s something you’d like to do. Surround yourself with books and TV that make you laugh. If anyone treats you badly, blames you for the disease or pulls away, that’s their choice, and it doesn’t mean it’s your fault. Some people react poorly when confronted with illness, and that’s their problem, not yours.
It is so important to research your doctors and specialists before you make appointments. Make sure they have no citations for malpractice and that they’re certified to do the surgical procedures you need. If your primary care doctor or specialist minimizes or dismisses your symptoms, or simply tells you they don’t know what to do with you, find another doctor immediately. Keep a journal of your symptoms. They might change on a dime! There are many applications out there besides pen and paper to track your reproductive health and endometriosis symptoms.
I have lost nearly 30 pounds, but I can walk again now that the colon growth is gone. Sometimes I can drive, which is fantastic after four months of being stuck in bed. As long as I follow the vegan diet my gastroenterologist put me on and take laxatives as prescribed, my digestive health is more or less back to normal. The extended-cycle birth control has made my life a lot easier as well.
There are days when I can go grocery shopping, drive myself around, eat three good meals, and go for long walks. There are other days when I need to stop what I’m doing and rest because of pelvic pain. There have been a few days when I’ve vomited frequently and couldn’t sit or stand at all due to pain, and it’s back to bed for me.
I have so many questions now, but it’s a great relief to see the end in sight. After the laparoscopy, we will know for certain if I do have endometriosis. It runs in my family, and it seems the most likely culprit. My greatest fear is that they will find nothing, but I hope that won’t be the case.
Thoughts that keep me awake at night: What if the intense pain comes back? What if I become bedridden again? What happens when I’m 35 and have to stop the birth control? What will my sex life be like? Will my partner still find me desirable and worth the effort if I’m sick on and off until menopause? What if the bowel disease and growths come back? How will I find an employer that is understanding of this condition, of how I may have to take 2 or 3 days off every month if I’m in too much pain to stand or drive?
Those questions don’t really matter in the long run. Being anxious and scared is normal after all these changes to my body and life. Researching this disease and finding treatment options and coping mechanisms is of great importance. Building a support network of friends and people who know what I’m going through also matters. Finding doctors I trust and can work with matters. I don’t expect anyone else with this disease to say, “That’s exactly what happened to me!” Endometriosis affects every woman differently. Symptoms can differ wildly from person to person. Accepting my body, no matter how much pain it’s put me through, is also important. I’m still worthy of love and friendship, and my goals are still possible, I just have to shift my perspective a bit.
I just came across this whole searching for answers myself. I’m wondering if you would be willing to provide an update. I live in the Las Vegas area as well and my doctors are very unfamiliar with resolving the same symptoms and just say it’s a heavy period. I do have an approved FMLA, monthly leave of 3-10 days from work, and insurance through work. I’m 38 and have been trying to conceive for 8 years and I’m finding more and more articles convincing me I must have endometriosis. I have also been to the ER a few times with vomiting and bloating so bad I look pregnant. I’ve had the trans vag ultra sounds and she scans. They only find inflammation and suggest gastroenteritis. I’ve had a colonoscopy and polyps removed. I really just want someone to cut me open and look inside, but can’t find a good doctor here to do that. Anyway, I’m just hopeful you found the solution and looking for suggestions.
Ink scans not she scans.
Hello Rosalie,
I have been researching endometriosis and adenomyosis, and stumbled across your post. I realize it’s been a while and I hope you are loads better now?
Your post honestly has made me feel lots better! For the past month, I have been battling almost-daily disabling lower abdominal pains that spread to my lower back and my left leg. IT began on the 23rd of May this year. I went to the hospital and was given No-spa injection intravenously to ease the crazy pain (my arm still hurts from the swelling. It took almost 20 minutes to give).
I had a pelvic scan done and the radiologist told me I had a small functional ovarian cyst and some fibroids. I was given some meds to help with the pain and shrink the cyst.
I reacted violently to the tramadol and threw up almost every minute! I had to quit it immediately. Meanwhile, the pain did NOT stop at all. One night I could not lie down, I could not sit, walking was painful… I had to crawl to my brothers’ room for help. I was crying helplessly at this point.
They rushed me to the hospital and I managed to sleep for an hour after taking sulpadeine.
I had a TVS done and no ovarian cyst was done, but the doctor told me what she saw looks like adenomyosis to her. My gynecologist wanted me to do a diagnostic laparoscopy to figure out if there is endometriosis as well, especially as adenomyosis is usually accompanied by endometriosis. She has however advised that I work on having a baby as soon as possible especially as the adenomyosis is still focal. If it spreads, it could lead to infertility; and the only real cure for adenomyosis is hysterectomy. I am only 27 and not married. I am dating someone, but we just started dating 3 months ago. He has been quite supportive, but a baby???
Just like you, for quite a while I feared they’d think the pain and symptoms were all in my head. I have struggled so hard to retain my sunny attitude and smile… but it is so hard! Sometimes like right now while writing this, I want to curl up because I am in pain again. It’s just not going away and the meds are only reducing the frequency and intensity. Not eliminating it.
My GP advised that if I start with a laparoscopy, I’d just not stop with the surgical procedures until my womb is taking away completely. Surgeons love to cut, he says.
Lord help me.
Hello, I’m glad you are being so persistent with getting answers. I have to say that I agree with others and unless you have excision, you will be in the same pain again. Also catheterization can cause more issues. I didn’t understand the complexity of the disease when I was first diagnosed. I had abalation and cautery with my first surgery. It provided very little relief. My doctor then thought I was crazy because she didn’t believe that I should still be in pain. I’ve learned from much research that excision is the best treatment for this but not many surgeons are skilled in this. Dr. Nezhat and Dr.Cook are in CA and are skilled. Unfortunately most people have to travel to get proper treatment. I live in CT and will be traveling to Atlanta next month to the center for endometriosis care for surgery. Dr. Sinervo has a success rate of 80-90 percent of getting all endo implants.That is actually a really high success rate for this disease. I’m telling you all of this because I would hate for you to go through surgery with no relief and unfortunately it happens to a lot of women. Most gyns aren’t skilled enough to test this disease but say they are. I can only learn from my mistakes of not getting proper treatment and help educate others. I wish you the very best!
Angela, thank you for your advice and concern.
I really don’t have any options other than an ablation right now. I have gap insurance, which has covered all of ten dollars of my medical expenses combined. I’ve had to rely on my relatives to contribute the down payments needed for the colonoscopy and upcoming surgery.
It is not financially possible for me to travel, much less work with a surgeon out of state on a cash basis. My relatives and I have discussed saving for an excision in five years. I’m also starting a new job soon that will provide insurance, and I’ll research my options there.
I appreciate your concern, but there really aren’t any other options for me at the moment.
I looked at a study done by the National Institute of Health (http://www.ncbi.nlm.nih.gov/pubmed/15950657), and it proves that both excision and ablation reduce pain for the first six months. I’m well aware that the pain, tissue, and bowel disease will return after that. There’s just not much I can do about it at this time.
I’ll be sure to look up Dr. Nezhat for my future plans. I also have another meeting with my surgeon soon, and I can ask her if she is a specialist and her thoughts on ablation vs. excision. Thank you!
I would definitely not just do the ablation I can’t express this enough. If you have stage IV and most likely you do because of the bowel involvement you need it CUT RIGHT OUT.
I don’t mean to scare you but if you have this surgery there is a good chance you will be right back in for surgery not long after that and again and again and again.
I will have to look around to see what specialists are in the Las Vegas area however I don’t think that I have seen too many over the years but it doesn’t mean there isn’t one.
Does your insurance cover this?
Can you travel to be seen?
IS there anyway you can get to NY to see Dr. Nezhat? He is one of the best surgeons.
I am not sure how it works in the US when it comes to see doctors however in Canada I can request a referral to be sent to the surgeon that I want operating on me.
Let me know
This link http://www.endofound.org/faq#faq1 lists resources for doctor referrals.
The excision method of endo removal is supposed to be superior and endo specialists will generally give you the best surgical outcome.
Liliana – endo-resolved lists an endo specialist in NYC as well as some pelvic pain specialists. I’ve heard of this endo specialist but don’t know anything about him.
Thanks to all of you for your kind responses! I’ll try to answer your questions with the information I have.
WS: They tested the growth in my colon for cancerous cells, not endometriosis. I wasn’t aware that was an option. My surgeon wants to do the laparoscopy both as a diagnostic tool and to remove the tissue causing the pain. She is certified to perform laparoscopies, but I’m not sure if she’s an endometriosis specialist. Honestly, it’s been hard to find doctors in Las Vegas who are familiar with treating endometriosis, much less specialize in it. I’ll be sure to read your story.
Liliana: I’m sorry, I haven’t researched any doctors or surgeons outside of Las Vegas. I wish you the best as well.
Angela: My specialists both believe I’m at Stage IV as well. I’m pretty concerned about the co-morbid conditions worsening. The surgery will be an ablation, not an excision. They’re going to cauterize the tissue rather than remove it. I have another meeting with my surgeon soon; I can ask her if excision is an option.
A big thank you to everyone who read and replied!
Sorry for all you’ve been through! It seems like the growth they removed would have been tested for endometriosis as part of the pathology. That may have eliminated the need for a laparoscopic exploratory surgery to diagnose endo. Is an endometriosis specialist doing your lap and will the tissue removed be tested for endo so you can get a definitive diagnosis?
You’re right that we need to research our doctors. The only problem is that there’s VERY LITTLE information out there. Medical boards seldom discipline doctors and very few cases of medical malpractice are even taken on by lawyers. And then very few go to trial. I believe out of court settlements are confidential so the patient is left with little resources and then little recourse when something does go wrong.
My long-time gynecologist over-treated me for an ovarian cyst and my records show that the main contributing factor was training of gynecology residents to meet hysterectomy surgical requirements. You can read my story here – http://www.hormonesmatter.com/unnecessary-hysterectomy/.
Best of luck in getting a diagnosis and proper treatment!
ouch you had a hell of a ride! I am very scared as I am not too obedient when it comes to taking pills!!!! I hope you feel better with yoga, Acupuncture, comic movies, green teas! That is my recipe!I am on non stop birth control pills and have zero sex drive, It is very weird, hate it! So i stopped and I am starting to feel sick. I want to do a laparoscopy and find where is the endometrioses! I have hope to remove it! Well, my best wishes for you!!!
Do you know a good endometrioses doctor in NYC????
I am sorry to hear about your sufferings. Your comments re researching whom you go to see are absolutely right. Endo treatment necessitates specialists! It is very complex. I hope your surgery goes well.
I had an operation on my navel area and the tests said I had endometriosis there. So I had a CT scan and they thought they saw endometriosis elsewhere. So I had an internal and external ultrasound scan. They then decided I didn’t have endometriosis and even if I had I wouldn’t have gone on the pill. All along I had no symptoms of endometriosis aside from bloating issues. Some $1000 later none the wiser as to what was going on.
First I want to say that it is amazing that you are at the point you are so quickly. It makes me think that there are some doctors out there that pick up the signs of this disease.
I am also glad you also had your partner with you right from the beginning so she/he has a better understanding of what it is your going through but also give vital information you might leave out because you either forget or didn’t see it as an issue.
You bowel issues sound like mine however I had a rectovaginal cyst that would cause knife like pains in my rectum and was told I had IBS and I went misdiagnosis with Endo for 17yrs. I had all the symptoms and then some as well as co-morbid diseases that seemed to follow.
By what I am hearing and the research I have done if the bowels are majorly effected than there is good chance that you have Stage IV endo which could be deeply infiltrated into the pelvic cavity as well as organs.
I really hope that everything goes well for your surgery and that this is what is going on so that you have some sort of peace of mind because of all the pain you have been through.
Do you know if the surgery will be excision?
Your first surgery counts the most so it needs to be done right. Excision and removal of all Endo even if its on your bowels, ureters and bladder. I was covered all the way up to the bottom of my rib cage. I had it everywhere. Getting it all out by cutting is the key in first treatment and diagnoses.
My heart goes out to you. You are on the right path towards diagnosis, and I hope you a.) find answers to your pain and b.) receive thorough and meticulous removal of the disease should it be present. There are 176MM others out here who understand; you are not alone. Feel free to stop by https://www.facebook.com/EndoResCenter and http://www.centerforendometriosiscare.com to connect with others who ‘get it’. Good luck to you!