Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Unknown Pelvic Pain...I Feel a Crazy

by Shauna Stevens
(Phoenix )

From the age of 15-19 I would visit the ER anywhere from 2-4 times a year with severe abdominal pain. Every time I was given a different diagnosis or none at all. Ruptured cyst, small cyst that will go away, gas, etc. my favorite was the time the doctors had convinced my parents I was there for the drugs.

One day when I was 20 I doubled over in pain, it was so bad i was vomiting. My friend took me to the ER just for them to prescribe me meds and tell me it was a strained muscle. I knew it wasn't, it was something more and inside me. I followed up with my primary a couple days later with my mom that insisted on figuring out what was wrong. The doctor sent me straight to the ER again with the assumption that my appendix was inflamed. They began with an ultra sound, as my mom watched she suddenly said "oh shit", which of course freaked me out. They found a softball sized cyst on my right ovary. Dec, 18, 2009, After 3 agonizing days I was in the OR having laparoscopic surgery to have the cyst removed.

I recovered great and life was good. Then exactly 2 years after surgery I found my self doubled over in pain and back in the ER. No one would listen to me, it felt as if they thought I was lying. I was referred to a surgical obgyn. When I went to his office he was great, he actually listened to what I was feeling. He told me, "no one knows your body more than you, if your in pain I will listen." That was such a different reaction to hear.

A week later, Dec,2014, we were in the OR undergoing a laparoscopic surgery to remove endometriosis and a small cyst. It turned into an exploratory surgery. I was told there was so much endometriosis and the cyst was bigger than he thought. My right ovary was very small and plastered to my pelvic wall. The right Fallopian tube was blocked and three times the normal size it should be. My left ovary was dead and engulfed in endometriosis. I was given 3 options:
1) have a total hysterectomy removing my ovaries, tubes, cervix and uterus
2) have just a bilateral oopharectomy and take my chances of having surgery again every year
3) do noting and just suffer in pain

After thinking over all my options, calling my mom to find our she was needing a hysterectomy as well, I decided to go with the total hysterectomy at the age of 24. I was informed and convinced this would take care of all my issues and I would be done with this forever. A week later, dec,13,2011 the hysterectomy was completed and I was able to go home 3 days later. It took longer to heal with having the 2 surgeries 1 week apart, but I eventually healed.

About 6 months later, June 2012 I was back in the OR having a bladder sling implanted. Yes the same one you see all over the tv having a recall. Mine is fine I have had it checked every year. No I do not have kids, I was told my bladder fell because my female organs used to hold it up.

Again we were back to normal, working, traveling with family, and enjoying life. Then Dec. 2013, 2 years after the hysterectomy and 4 years after the 1st surgery an 11cm cyst was found on my right side. I was so confused. How could this be? All my female organs have been removed. Little did i know that there is something called Ovarian Reminent Syndrome. Cells can be left behind and your ovaries can regenerate themselves. Yay! We were back in the OR 2 weeks later.

The surgery was set to be laparoscopic, however after attempting this method they had to move to a laparotomy. The cyst was tangled and very large. I was kept in the hospital 2 days and then released home. 2 days later my belly button where the laparoscopic incisions were started bleeding, bad. So another trip to the ER was made. 4 days later they found the issue and I was sent for surgery to implant a uerter stent. From a small nick made to my uerter. This was the most painful. My body rejected the stent and it was emergency removed 3 weeks later. It was such a great feeling to wake up out of a surgery and not be in pain.

Since my hysterectomy I have been on bio identical hormone replacement pellets. They are very expensive but the only thing to help me feel somewhat normal, however I have been reading that this can feed endometriosis and cysts, so I am confused.

Fast forward to now, Sept 2014. I went to the ER Sunday night with sever abdominal pain. Of course all tests came back normal. I made a follow up with a different obgyn and my regular one. Yesterday I saw the new one, she told me that everything in my history states it's removed, endometriosis doesn't come back and it is probably in my head from being sexually abused as a child. I was given a number to a pelvic pain doctor. Once again I felt defeated and crazy.

Today I went and saw my regular OB, he felt my stomach and said I have a lot of scar tissue. He said the pain is probably from that or endometriosis scar tissue. There are no more tests he can perform so we need to have exploratory surgery to see what's going on and to remove the excess scraper tissue. I feel good that he is listening and going to check things out. However I spoke with my mom and she's says no, so now I feel defeated again. She says that I need to find several specialist:
1)allergist for food and inflammation. Says this will cause pain.
2) endometriosis specialist
3) hormone specialist
4) physical therapist for scar tissue.

I just feel lost, I am in so much pain. I cannot sleep and the pain meds are not helping. When the pain is so bad I end up vomiting. I feel as if I am going crazy with this.

Thank you for listening I needed to vent, I hope someone has some suggestions for me.

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Nov 29, 2014
Pelvic pain
by: Anonymous

I too suffered from severe pelvic pain. Went to 11 specialists, had X-rays, MRI's you name it I had it and all came back negative. I have endometriosis and we thought that was the cause...they put me through 6 months of menopause but the pain still remained.

My PCP finally sent me to a pain clinic, but that was just a band aid to cover up the real issue. I am a nurse, so I pulled out my OB text and my cadaver book. I pinpointed the areas of pain and looked for the nerves that innervates the area. The pudendal nerve was the one nerve that innervates all areas of pain.

So I started researching pelvic pain and the pudendal nerve. I was convinced I had PNE....where the pudendal nerve becomes trapped within ligaments of the pelvis....the condition is rare and only a handful of docs in the U.S. do surgery to correct it.

It took a lot of research and showing my doc and a few other specialists who actually listened to get me the referral I needed. 6 years later I have had two surgeries, I still experience pain, but am on the mend.

The pudendal nerve was completely flattened....with little nerve conduction. My surgeon Dr. Antolak was amazing, fortunately I was one of his last patients to do surgery on because he retired.

My first surgeon, out of CA was horrible. So stay away....he's the only one in CA. You can go to pudendalhope.org for more information. For all of you who have been to specialists and they looked at you like you were crazy, I feel your pain.

I pissed off my share of doctors, but I knew I wasn't crazy or this was conversion disorder. I was persistent and had research to follow up my diagnosis. Good luck in your journey seeking relief.

Nov 17, 2014
Multiple opinions and specialist
by: Anonymous

Keep making appointments to get 4,5,6,as many as it takes for multiple opinions. You will find someone that will listen. Make an appointment for a pain specialist to perscribe meds to get you through it. Find an endo specialist!

Nov 13, 2014
Agonising pelvic.pain and no answers
by: Veronica

Omg I am going thru the same issues and my Dr said I have a 2.9 cm cyst and a fibroid however, "the pain is not from that". I have been in agony for one month ....been to the ER 3 times in a month and they say I have nothing, they won't even give me meds because they say I can take over the counter meds.

I'm desperate not one of them will listen to me and I'm slowly losing hope and crying myself to sleep every night... Can someone help me?

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