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Re: severe endo and fertility
From: Nicki (anonymous@obgyn.net)
Fri Oct 31 18:57:44 2008
Hi Bren-
thanks for your reply. I'm sorry to hear all you've been through.
Sounds terribly confusing and frustrating. And sounds like getting a
specialist in endo is the way to go - is that possible for you?
I'm quite confident in my specialist. I'm in Australia and she is one
of the top endo specialists here. I haven't had a lap yet, but she is
quite certain it is, and from what I've learnt about endo it all fits.
My story:
Always had painful periods - but managed with neurofen, thought it was
normal. Never had any difficulties with irregular or heavy periods.
Always had some blood in stools but had a colonoscopy 6 years ago and
was clear. Up until 3 months ago all was fine. 3 months ago I started
to get increased symptoms just before and fist day of period. consisted
of rectal pain (chronic ache and intense pain), tenesmus (constant need
to use bowels but nothing there - with pain). When to gastroentolgist
because of the bowel symptoms. Had a colonoscopy which revealed a polyp
and an inflammed skin around my sigmon colon. The polyp was removed and
since I have not had bleeding. He did no know what the inflammed skin
was as it come back normal. Since this, whcih was about a month ago, my
pain in my rectum is not a constant ache, and on next period has same
increasing bowel problems and stools had blood - only with the period.
Saw the gyno/endo specialist. She thought that she could feel some
nodules behind my vagina next to my bowel, and thinks that the inflammed
skin inside my bowel is the endo pushing through. She seem quite
certain - although of course saying will only have a definate answer
with the lap. But she's so certain she has organised a bowel sugeon to
be present during the lap because depending on how deep it is my bowel
may have to be resectioned. Aparantely this is quite rare, although she
sees 1-2 people with it per year. So now I'm awaiting surgery, which is
looking to be another month away.
So that frightened me, but as I mentioned I just can't stop thinking
about the fertility, because everything i read says that the more sever
it is the less likely fertility is. Although she hasn't looked with lap
yet, she thinks its severe because it is likely penetrated the bowel,
and says if it is that bad there it is going to be in other places. I've
got other random pains through my pelvis- but probably ignored them
until now because they are not intense. In on respect i am lucky
becuase I don't have the chronic debilitating pain that others seem to
suffer with.
Thanks and keep in touch!
At Fri, 31 Oct 2008, bren wrote:
>
>Hi Nicki-
>I was just wondering what kind of symptoms you are having? Is the doctor
>who diagnosed you w/ possible endo an endometriosis specialist or obgyn
>specialist/pelvic pain specialist, etc? I was also wondering what kind
>of tests/exams you had done? I was diagnosed w/ endo as well before my
>lap and have been (and still am) experiencing a lot of symptoms along w/
>debilitating sciatic pain. Before lap, I had a pelvic u/s and MRI of
>the pelvis & abdomen and the only thing that was found was that I have a
>retroverted(tilted) uterus and had a lot of constipation at the time. I
>still suffer from bowel symptoms/pain and constipation and feel like
>endo was missed in this area during my lap surgery because my doctor
>(obgyn specialist) is not fully experienced w/ all the manifistation and
>appearances of endo and the pain that it causes. At first, he stated
>that he did not think that my GI issues could be related to endo when
>research shows that women w/ endo often suffer from IBS symptoms or
>other GI problems, especially constipation that can alter from that to
>diarrhea (sorry tmi) before and during your menstrual period. I also
>noticed that w/ each bowel movement or when I am constipated or when my
>bladder is full, that I have more pain (especially the sciatic pain).
>During lap, my doctor said he only found a lot of scar tissue and
>adhesions from my appendectomy in 2003 that spread throughout...and I
>don't see how it can spread to other locations and even my
>"appendicitis" is questionable...I had severe pain that started off as
>an indigestion feeling in 2003 and didn't even go to the ER until
>sufferring for about 3 1/2 days because my mom thought it was just an
>ovarian cyst or from my menstrual cycle. When I went to the ER
>(horrible) they took me right in on a wheelchair, put me on a "bed" and
>just hooked me up to the IVs and machines to keep track of my vitals and
>just kept shooting my IV w/ morphine (which just "pissed" me off because
>my pain was so severe and it was like they were using the morphine
>constantly to try and sedate me so I would stop screaming and pass out).
>The pain was so bad that the morphine didn't help the pain and they
>would just give me enough to pass out. I got there at 10 am and didn't
>go into surgery until about 7 or 8pm. They made me drink the
>radioactive fluid for a CT scan (hard to drink all that when your
>stomach is feeling sick-took me an hour or so) and right when I finished
>it, the doctor came and said "oh-we don't need a CT scan...sounds like
>you have appendicitis and we're just going to take you into
>surgery"...so what a waste of torture because after surgery, that CT
>fluid made me sick to my stomach I was having major "you know what" and
>this was not easy having to constantly get out of the bed to use the
>restroom...I couldn't even get out of bed alone...Oh and I came out of
>surgery at like 10pm and the nurses just made me sleep, so instead of
>being released the next day, I ended up staying a week because I caught
>the hospital induced pneumonia and leg edema because they didn't put
>anything on my legs for circulation and didn't even notice it. My mom
>noticed it and had to go to the department to complain and get something
>on my legs...Anyways, the "appendicits" was/is questionable now because
>the doctor said if I waited longer, my appendix would've burst, but my
>WBC was in normal range, which is usually not possible when you're
>appendix is about to burst. I feel that it was endo at the time because
>my symptoms w/ my menstrual cycle worsened ever since...I sufferred many
>years w/ diagnosis of dysmenorrhea & PMDD thinking that this was all
>normal. My Period pain is so bad that I cringe right before and
>during...I know exactly when I'm about to start because I get
>contractions. So,..anyways,,,sorry for babbling...I just am lost to how
>endo was not clearly seen in my lap when I have all the symptoms, was
>diagnosed w/ a rectal/vaginal exam (lots of tenderness and nodules felt
>posterior my uterus, tilted uterus, etc) by 2 doctors...and it's tough
>cuz my ob even admitted he doesn't know all about endo....I really want
>to see an experienced endo specialist, but I have Kaiser and I don't
>know if they really have an experienced one who knows all the
>appearances of endo. I have photos from my lap, and many areas just
>don't look right to me...My doctor wanted to put me on Lupron but
>changed his mind (strange..he suddenly did while meeting w/ him and
>talking about treatments & I was actually talking about concerns w/
>fertility issues, etc..& then he switched his option of treatment to a
>higher dose of Yasmin BC except too bad I had really bad side effects
>from it).....Now I'm on progesterone only BC pills (Medroxyprogesterone
>5mg aka Provera) to help w/ my Heavy Long periods..which I don't know if
>it really helps a lot..it helps some, but I still get a lot of
>pain......Anyways, sorry for rambling on...maybe someone out there who
>reads this had similar experiences to share w/ me...all of us seem to
>have our bowel affected by endo or adeno or some other that our doctors
>missed....BTW, if you are concerned about your fertility, you should ask
>for a fertility test. I requested one and my doctor had no problem
>ordering that for me....Hope all goes well for you and keep us
>posted...Wishing you a pain free and symptom free
>day-week-months-years..etc...etc.....
>*Bren**
>At Fri, 31 Oct 2008, Nicki wrote:
>>
>>Hi. I'm 'newly' diagnosed. haven't had a lap done yet but Dr is sure
>>it is endo and is severe because i've got intense rectal pain, bleeding
>>and inflammed skin on the inside of my colon. She thinks that the endo
>>is penetrating through. So I need a lap and likely bowel resection.
>>I'm worried about the surgery, but I can't stop worrying about
>>fertility. We had been trying for 2 months and Dr thinks that we
>>wouldn't have been able to conceive naturally at the moment (I'm just
>>30). I've been trying to get stats on severe endo and fertility rates,
>>but it seems to vague - in that people say fertility is definately
>>decreased, but don't know by how much.
>>Does anyone have experience of having severe endo and conceiving either
>>naturally or through IVF? I would greatly appreaciate any experiences.
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