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If you suspect endometriosis, don't let them fob you off!

3 replies

lastboxoftampons · 05/10/2013 19:12

Just wanted to give a little FYI to those of you who might be struggling with infertility and suspect endometriosis. I just had a laparoscopy this morning to remove a 4cm cyst that my RE swore was a dermoid. My research all pointed to endometriosis. I spoke to him several times about endo - not to mention several other doctors, sonographers, nurses, etc - I was fobbed off very time.

Went in for surgery this morning, when I was in recovery, the RE came in and was really chirpy, saying it was in fact endo, but that we were now in a really good position to proceed with IVF. Basically he's been pushing us to proceed with IVF and we were all set to start this month, but I had a fainting episode with my last period so I called it off and pushed to have the cyst removed. I KNEW it was endo.

Needless to say I'm incredibly angry that I wasn't taken seriously all along and so upset that we've wasted so much time.

For those of you with suspicions, my symptoms were lots of spotting - premenstrual and mid cycle, very sore breasts, heavy periods with lots of large clots, rectal bleeding, uncomfortable bowel movements, alternating constipation and loose stools and these fainting episodes. Three times this year, I had a horrible stomach cramp shortly after waking up, went to the bathroom, turned white as a sheet, sweating profusely and nearly passing out, usually first or second day of my period. I've had cramps/painful periods (especially in my back and my thighs) but nothing I couldn't manage with Advil and sitting against the radiator. And it was because I never had debilitating pain that no one took me seriously.

Hoping this helps someone out! Very happy to talk about it if anyone has any questions!

OP posts:
lastboxoftampons · 05/10/2013 19:13

Sorry, just to clarify, by "RE" I mean "Consultant"

OP posts:
Heart7 · 06/10/2013 10:13

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lastboxoftampons · 06/10/2013 21:53

Heart7 - I'm sorry you went through the same but congratulations on your DD. I'm glad to hear you were successful! My pathology report says the surgeon did diathermy (ie, burning out) to thin adhesions and endo spots that I had and then a cystectomy to remove the endometiroma. What I'm concerned about though is that it also says they found bowel adhesions, but that they were "not divided as patient not symptomatic" Not that anyone has asked me if I've been symptomatic! But I'm left wondering if, for the purposes of TTC, bowel adhesions are as much of an issue as other pelvic adhesions - so was the surgery for nought?

I am looking forward to trying naturally for the next few months, paying careful attention to my diet, etc. We've got an international move coming up so when we get settled I will do some research and look for a specialist now that we know for sure that we're dealing with endo and if it comes to IVF, I will hopefully find someone who has the knowledge of the disease and who will prescribe the appropriate protocol.

Can I ask, now that you have DD, how are you managing your endo? We have a 4yo DS, and I'm 37 now, so if we're lucky enough to get pg again, it will be our last baby. I have given some thought as to what I'll do after having another - my biggest fear, TBH, is endo invading my bowel or other organs and causing real complications beyond pain.

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