Deep microscopic endo? Prostap? IBS? Confused!

[steph-89]

Hi ladies,

Has anyone heard of this or been told you may have it? I've had "IBS" for about 9 years now with loads of bowel problems, backaches, nausea, low mood, low libido, fatigue and deep pain during sex.

I finally had a diagnostic lap last December to see if endo was causing the pain during sex but no endo was found. I had Botox in my vaginal muscles for the superficial pain which has helped, but the deep pain is still causing problems. I went back to see my specialist today who said I may have deep microscopic endo which they wouldn't have been able to see during he lap. The other thing he suggested is adenomyosis but I really don't have particularly heavy periods or bad period pains - has anyone else been diagnosed with endo/adeno without heavy periods or bad period pains?

I'm starting a three month course of Prostap next month to see if that improves my pain, and if it does then I assume they will decide I have microscopic endo or adeno, but I feel quote sceptical about it. I'm worried about the side effects of Prostap - it seems a bit extreme when I don't actually have a diagnosis.

I'm also under investigation for IBD so hopefully something will come out of it soon!

[Hidden]

No experience but when I read your post I knew I'd seen something about it somewhere. This may be useful to you, I don't know...

endopaedia.info/subtype4.html

[steph-89 in reply to Hidden]

Thanks for the link Marie! Certainly an interesting read, my gynae did tell me today that some don't actually believe in microscopic endo.

[Hidden in reply to steph-89]

No probs! Much of what you read are people's personal opinions. Especially on forums such as this. I think it's best to read a lot and keep your mind open!! Good luck! X

[Hidden]

Wow. Just keep putting me in my place why don't you.

Seek the advice of a real endometriosis specialist Steph.

[steph-89]

Hi Lindle,

Thanks for the advice, I'll definitely look into getting a copy of those. I am in the UK and the hospital where I had my diagnostic laparoscopy is listed on the BSGE website as a specialist centre, so I just assumed they did a thorough examination! The gynaecologist who I see there was described as a specialist though am not entirely sure he carried out the lap!

[steph-89]

Just a quick update - I haven't had a written copy of my surgical notes yetbut the receptionist at the hospital did read them out to me... They said that my liver, gall bladder, diaphragm, uterus and ovaries were fine, but there was no mention of my bowel or the pouch of Douglas anywhere in the notes. The receptionist said they do routinely check the bowel and she thinks they will have looked at mine, but as it's not written in the notes she can't be sure. My consultant is also on holiday so she can't check with him for two weeks... So I suppose I'm no further forward in that respect!