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Adenomyosis vs endometriosis

By March 1, 2010 - 8:46am
 
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I am a 46 year old woman who has had two full term sucessful pregnancies in 87 and 89. Post delivery of second child I had a tubal ligation. In 1998 I was diagnosed with adenomyosis and had a hysterecomy to remove my cervix and uterus. Two years later I developed salpingitis and had my fallopian tubes removed. In 2000 I was diagnosed with IBS after tests could prove nothing else to be causing cramping pain. Most recently I had severe chest pains primarily on my left side radiating under breast bone and in to my back. After a battery of test to rule out everything else I was told I had a case of chostocondritis due to an injury ( I don't recall having an injury occur). I have also always had pain during ovulation as my ovaries are still intact and I am not premenapausal at this point. The pain during ovulation (as I am to assume it is ovulation occuring about every 28 days) has become more intense and lasts longer. In the last 6 months I have begun experiencing pain during sex. I schedule an OBGYN appt after ultrasound proved my ovaries were fine I was given 3 options. 1) birth control, 2)an expensive injection once per month, something which most insurance companies do not approve. and 3) laparoscopy. The first two were to eliviate endometriosis however the diagnosis is not confirmed. It is possible since I had adenomyosis I could also have endometriosis. The last would be to confirm this. It is obvious that number 3 is he most practical however he informed me he may not find anything. He also mentioned something referred to as mid cycle pain. There is no known cause for the pain. I am in the wait and see game right now in hopes it is the last and that it is primarily a matter of avoiding that time of month for sex. However after reading a recent article stating that the two can be connected endometriosis could cause adenomyosis and that a misdiagnosis of pelvic inflammatory disease and IBS are not uncommon. This article also stated that endometriosis left untreated can break away and not having a way to exit the body can form together in other areas of the body as a cyst. I am starting to wonder if all these ongoing undetermined issues that are diagnosis with "well if it isn't anything else it must be this diagnosis" may indeed be caused in the long haul by an ongoing issue with an underlying non visable problem with endometriosis. Does anyone have any further information about the connection between adenomyosis and endometriosis. And/Or has anyone else ever experienced a similar issue.

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Anonymous

Thid board is the most insightful and detailed board I have ever found. I can't believe I actually have so many things in common with this person and having such a bad gyn history. I have actually had a doctor walk out on me during a gyn exam with tools left inside of me, stating he had another patient that needed him (he doesn't deliver babies either) I had previous procedures done a year prior to seeing this doctor I was asked by this doc how long ago my procedures were done (other doc had left state) I let him know it was over a year since my procedures and that's when he walked out on me, my husband was with me and we were in such shock. As I lay there naked with a sheet embarrassed humiliated and obviously still wanting answers since I drove 2 hrs to get to this "specialist" I just cried and we left but not before they had asked me to make another appt and I had already paid when I first got there plus I have great insurance, needless to say I never went back

September 29, 2014 - 8:02pm

MDR,

Thank you so much for your update. I am really happy that your decision to go on the estrogen patch is helping you! The fact that you listened to yourself and your body and have now ultimately found some relief is inspiring.
I think you might really be interested in reading this post of mine from a few months back on EmpowHer, and maybe linking to and reading the story in the New York Times magazine that I am writing about. It was fascinating to me and you have a lot in common with the woman writing the story:
https://www.empowher.com/menopause/content/estrogen-dilemma-maybe-best-article-ever-hormone-replacement
Wishing you continued progress. Come back again!!

June 3, 2010 - 8:18am

I have now been on the estrogen patch for 30 days. I am feeling much better, the mood swings have subsided and the night sweats are much less or not as extreme. I still experience them but they are not as bad as they used to be. So far all is going great. The vaginal dryness and pain I was experiencing is also subsiding with the aid of a lubricant when needed. My sex drive has picked up again and I no longer fear the pain I was getting before. The Estrogen patch I am using is vivelle DOT. I change my patch twice weekly. I am not using any pregesterone in my HRT as I do not have my uterus and it is not necessary. I do hope my story helps someone else in their search for answers. I do not regret starting the patch at this point, however years ago this was offered to me and I declined until I was really in need of the help as long term estrogen use can be dangerous. Since I have been in perimenapause now for a few years as that is when my symptoms began although blood tests could not confirm this, the symptoms were enough to tell me something wasn't right, my hope is a few more years down the road I will be done with this and can cease taking the estrogen. My concern now is increased belly fat and I am watching this very carefully as well as my diet and sodium intake. I have a healthy heart now according to the Dr so I am hoping to keep it that way. I will let you know if anything changes in the future.

June 2, 2010 - 8:43am

I am writing now to explain what has happened since this was originally written. These symptoms amoung others could be caused by perimenapause. As you will read my results in this post
https://www.empowher.com/community/ask/i-am-pretty-sure-i-am-now-menapause-would-thoughts-treatments-tests-etc. I won't go into details again. I will say I am now starting on an estrogen patch to see if it helps with the symptoms and will keep all informed as time goes on.

May 7, 2010 - 2:08pm
(reply to mdr1963)

MDR,

We truly appreciate the update. I'll be very interested to see what your experience is with the estrogen patch. I hope it helps you feel like your old self!

May 10, 2010 - 9:20am

Yes this does help. Oddly enough the chest pain has returned but in too short of a time to be due to ovulation or Menstration. Now that I have said that I went back to see what the date was I went to the hospital with the first onset of chest pain. Believe it or not it was January 31, now it is March 3.. so doing the math It would be 30 days exactly.. however I didn't have any pains in my ovaries or that area this month which I normally do. The chest pain lasted almost two weeks last time. I am hopes it will not be around that long this time nor can I figure out what I am doing to aggrevate it. I do have occasional drenching night sweats (so bad I have to change my clothes) but not necessarily associated with or in the time frame of the chest pain or ovarian pain.

As for the Laprascope I am leaning in the direction as well. The birth control pill scares the heck out of me only because after the birth of my first child I attempted to go back on the BC (I had been on them since I was 17 and went off them to get pregnant with my first child at age 23. My body rejected the BC the second time around, I was very sick so much so that it wasn't worth taking them so I took the diaphram approach instead and 11 months later I was pregnant with #2.

I have a business trip to attend mid month so when I return I will reevaluate the situation and make my decision. Yes I have had a complicated GYN history. I thought it was over after the last surgery in 2000 but here I go again. I feel like there is nothing left to take out but now knowing that the endometriosis can develop and this could be the cause of pain I have to think about this all over again. I really do not want to loose both ovaries the OBGYN suggested maybe taking one out, we discussed my family history and when I may go into menapause my mother had a hysterectomy at age 45 and had not gone into menapause but did immediatly following her hysterectomy. my only sister 8 years my elder started at age 46 within two years following her hysterectomy (she was left with 1 ovary) there is a chance it will start anytime for me. I did have a base line test done years ago so we could watch my hormone balance. It might not be a bad idea to do this again to compare the two. I would think if I was due to go into peri or full menapause my hormone count would indicate this. The OBGYN mentioned if that is the case removal of both ovaries might be the best idea.

No matter what I decide it will be a tough decision to make. I will keep you posted on my final decision.

March 3, 2010 - 12:43pm

MDR1963,

I sent your question to Dr. Philip Sarrel, Emeritus Professor of Obstetrics and Gynecology at
Yale University School of Medicine. Here is his reply:

------

MDR,

You certainly have a complicated gyn history: hysterectomy for adenomyosis when you were 34 and then removal of your Fallopian tubes two years later and now a combination of symptoms including pain with intercourse, abdominal pain and chest pain severe enough to warrant a medical work-up.

An ultrasound found your ovaries looking normal. A laparoscopy (a look inside your abdomen) was suggested.

Could all this be due to endometriosis ? Sure. Endometriosis is when tissue that normally lines the cavity inside the uterus grows outside of it-on the ovaries, throughout the abdominal cavity and in the spaces around your vagina affecting the bladder and the rectum. When that happens, intercourse is usually painful. The presence of endometriosis would be diagnosed by a laparoscope and I vote in favor of your having that procedure.

What about the chest pain ? There is a real possibility that fluctuation in your ovaries' estrogen production could trigger the chest pain. That occurs most often with onset of menstruation but also can occur with ovulation. In our studies we have seen the chest pain that relates to the menstrual cycle is also associated with feeling very anxious and with sleep disturbance. And also, with periods of feeling hot and cold.

When you don't have any menstrual flow, it's harder to figure out if the chest pain would've been associated with a period. The idea of an oral contraceptive pill is a good one. The idea of the once a month injection, in my opinion, is not a good idea. I'd be
concerned it could aggravate the chest pain and the pain with intercourse. But first, go ahead with the laparoscopy so that your
doctor has a clear idea of what you're dealing with.

Dr. Sarrel

-------

MDR.

Dpes that help you? Please come back and update us on what you decide to do and what you find out.

March 3, 2010 - 10:45am

Sure Thanks for getting back to me so quickly.

March 2, 2010 - 12:15pm

Mdr1963,

Thanks so much for your question, and welcome to EmpowHer!

I would like to see if we can get one of our medical experts to answer your question. Can you hang in there with me for a few days while I do that?

March 2, 2010 - 8:50am

I realized after posting there is a couple other useful pieces of information I should add.

1. 2 months prior to becoming pregnant with my first child I did have 1 miscarriage at 12 weeks term, upon confirmation of miscarriage a D & C was scheduled and performed.

2. In 88 I was rushed to hospital for what was though to be apendcitis after blood tests showed I was pregnant and eptopic pregnancy was expected. It was determined after laparoscopy that I had an very large cyst on my left ovary. Pregancy was carried to term with second child being delivered 15 days post due date weighing in at 9lbs 9oz.

3. Post birth of second child a piece of my placenta was left after delivery 7 days post delivery in intense pain with high fever I went to my OBGYN who after examination found the left over placenta and did another D & C to remove. I was giving antibiotics and pain meds.

March 1, 2010 - 9:03am
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