diagnosing endometriosis Archives

Dealing with Doctors When You Have Undiagnosed Endometriosis

Published on May 16, 2013

6818 views

I have been going from doctor to doctor for 23 years for my endometriosis. I have yet to find one that actually listens to me. Is it me or do doctors not listen to patients? Maybe they don’t believe us when we describe the pain of endometriosis. Maybe they don’t believe us when we break down and cry after years of misdiagnoses, endless medications that didn’t work or made things worse. Or maybe, our pain is just too real and because they know they cannot treat it, they back away and ignore it. I don’t know why so many doctors treat endo patients the way they do, but I know it’s never going to change if we keep suffering in silence. The pain is real and shouldn’t be ignored. That is why I share my experiences here on Hormones Matter^TM and on other social media sites. If we don’t speak up, how will they ever understand how much we suffer?

My Experience with Doctors

My first doctor seemed like she was out of it and not interested in my pain. I didn’t feel that I could speak to her. I was young and so I just believed what she said and left it at that. I always thought she would tell me what I needed to do next to feel better. I went to see her about my horrible cramps. Immediately, she thought it was endometriosis and left it at that; no medications, no treatments, and no advice whatsoever. At 13 years old, I didn’t think twice and went on my merry way.

Soon, the pain was so bad that I found another doctor. I saw him for almost five years. He ordered tests, prescribed different antidepressants. Needless to say, the antidepressants did nothing for the pain of endometriosis. If it wasn’t blatantly clear that it was cancer or some other obvious disease, he had no clue what he was doing and he had no interest in diagnosing or treating my pain. He finally told me that I cried too much and that could no longer be his patient. I think he’d cry too if something were strangling his insides.

During my teen years and into my 20’s I must have seen over 15 doctors and specialists. I had a neurologist tell me to touch my nose and when I did, he said I was fine.

Probably one of my worst experiences with a doctor came three years after my daughter had been born. One day I called, because I was feeling flu like and nauseated every day. The secretary booked me that day even though they were busy. While I was in the waiting room, I could see the doctor having an argument with his assistant, I assumed for putting me in when he was full. When he called my name and while walking into the room in front of everyone, he said to me “What is so wrong with you that you had to bud in front of all of these fine people?” OMG I was so angry I told him I didn’t need this treatment and walked out and never went back to him again.

At this point, I had been suffering with untreated Stage IV Endometriosis for 13 years. I had seen multiple doctors who either ignored my pain or made me feel as though I was somehow imagining it. Frustrated, I finally started to do my own research. I found support groups online to help me with what questions to ask the doctors. I found yet another doctor and scheduled an appointment. He told me after reading my Ultrasound report that he was sure it was endometriosis and that he would book a surgery for it.

Talking to my friends online made all the difference in the world. They told me to ask questions like what to expect, what could make the surgery change from laparoscopy to open surgery etc.

Next time I went in to see this new doctor, the one who said my ultrasound showed endometriosis, I started the conversation with “The last time I was in you said I probably had endometriosis” I was about to finish my sentence when he got really angry at me. He said that he never said I had endometriosis. When I tried to ask more questions, he got mad and said I wasn’t ready for surgery and then cancelled the surgery and red flagged my file. I was so confused. Why was I not allowed to ask questions? It was my body that he was operating on. He had such a God complex. I walked out of his office.

No wonder people with long-term, undiagnosed medical conditions get depression. They are treated like crap, like hypochondriacs and as if we are wasting the doctor’s valuable time.

After 15 years of excruciating pain and being treated poorly by many doctors, I finally found a doctor to operate on my Stage IV Endometriosis. The surgery was a success. I thought that I would feel vindicated, but I didn’t. I was, and I am still, angry with how I was treated.

I have been talked down to by many doctors. They have made me feel really uncomfortable about myself. They made me think I was going crazy. I can’t even count of how many times I contemplated suicide because of the mental stress my health put on me, the fact that I had no one to understand what I was going through and not even a doctor who cared to listen. If they did, they would have known I had all the symptoms for endometriosis.

Even after all of this, every new doctor brings with him the risk for misdiagnosis and mistreatment. Read my story about developing Pelvic Inflammatory Disease, Post Endometriosis Surgery and the horror of getting that diagnosed appropriately. My present doctor now knows nothing about endometriosis, a disease that affects millions of women around the world. How does this young, female doctor NOT know?? I just go there now and tell her the tests I need done and what drugs I need or if I need to change them. She does nothing on her own.

Lessons Learned about Endometriosis

If I have learned anything through this ordeal it is too keep your own medical records, be an advocate for your own health and ask a lot of questions. If you want sympathy or empathy and a little understanding do not expect to get it from your medical doctor. Find an online community of women with a similar condition. That is where you will find the support you need to survive.

Lupron or Laparoscopy to Diagnose Endometriosis?

by R S

Published on May 16, 2013

5161 views

I recently had my first pre-operative appointment for the diagnostic laparoscopy I’m having soon. I was nervous, and had a list of questions for my doctor. This was the second gynecologist I’d seen to discuss diagnosing endometriosis; my other doctor is too elderly to operate. She was frank and very straightforward.

“There are two options for diagnosis: a laparoscopy and chemically-induced menopause with Lupron. If we do a laparoscopy and find nothing, we still have other diagnostic options. It’s a good sign that you’re doing better after a brief time on hormone-replacement therapy and then extended-course birth control. If we do find nothing, we’ll try Lupron, which will chemically induce menopause. If Lupron doesn’t work, you don’t have endometriosis, and you’ll be looking at other tests.
We’ll schedule you for one more pre-operative appointment where you can ask all the questions you have and you’ll register with the hospital where the surgery will be performed. You’ll go home the same day, and you should take it easy for three days. In two weeks, you’ll have a follow-up appointment where we’ll go over what we found inside your pelvis and check your surgery sites for infection.
Then, assuming you do have endometriosis, we’re going to evaluate you every six months to a year. You’re going to tell me how much this disease is affecting your quality of life. If the pain and immobility returns within a year and your current treatment options stop working, we’ll try inducing menopause.
Lupron has its risks, but it allows us to achieve valuable steps both in terms of symptoms and diagnosis. You’ll get an injection every three months. When you decide you want to try pregnancy or want to stop the course of treatment, you’ll stop the shots and return to your natural hormone cycle. The effects of this shot are reversible. If you do have endometriosis, Lupron will relieve all your symptoms. We’ll also know for certain that this is endometriosis. If you still experience pelvic pain and cramping while using Lupron, you don’t have endometriosis. The side effects may be intense, but it’s something to consider if you get worse over the next few decades.”

I told her I was worried about the surgery itself. It’s a very common diagnostic procedure; it’s minor surgery and thousands of women undergo it every year. However, a close relative of mine underwent a diagnostic laparoscopy in her early twenties for endometriosis and her doctors decided to give her a hysterectomy. Obviously, her health history was somewhat different and it was medically necessary. Still, it’s hard to sign up for a small procedure if you could wake up without one or both ovaries or all your reproductive organs.

She asked me when this happened. It was the 1970s. She leaned forward and said, “That was a very long time ago, and medicine has come a long way since then. The biggest difference is that there were no female surgeons and very little research on the risks of hysterectomies on very young women. We’re not going to remove any of your organs, no matter how bad the extent of your endometrial implants. You’re much too young, and your imaging shows no tumors or large cysts. There’s no reason to put you through that. You may decide you want to have children later in life, but that’s not the main motivation for keeping your organs. Where do your hormones come from?”

“My ovaries.”

“Yes, and they’re very important to your overall health. You need to keep them. If you were 50 and approaching menopause, we’d be having a different conversation. I want you to write down any questions you may have, but I don’t want you to be concerned with keeping your organs.”

We then went over what a laparoscopy is. I’ll be put under anesthesia and my abdomen will be inflated through my navel. The surgeon will insert an instrument to manipulate my uterus. She will then insert a very small camera through my navel and a cauterizing tool. If she finds evidence of endometriosis, she will use the cauterizing tool to ablate, or burn away, the endometrial tissue. I thought this would take hours. She said it should only take a very short time; the large time frame for the surgery is to regulate my sedation and anesthesia. After the ablation, my abdomen will be deflated and they will move me to recover from the anesthesia. I’ll go home the same day.

In another week, I’ll have one more pre-operative appointment where I can discuss some of the questions raised from responses on this site and register with the hospital where the surgery will be performed. I’m anxious, but I’ve done some research and feel comfortable with my choice of surgeon. With any luck, I’ll have a diagnosis and a treatment plan within another month.

Please note, Lupron can neither diagnose nor confirm endometriosis. Lupron was never approved for such uses. For more information, please click here: Lupron.

Participate in Lupron Research

Hormones Matter^TM 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.

Is it Endometriosis?

by R S

Published on May 9, 2013

6899 views

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.

diagnosing endometriosis

My Experience with Doctors

Lessons Learned about Endometriosis

Related posts:

You might be interested in

Participate in Lupron Research

Related posts:

You might be interested in

Related posts:

You might be interested in