Deep microscopic endo? Prostap? IBS? Confused!

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!

Last edited by

9 Replies

oldestnewest
  • 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

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

  • 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

  • Hi Steph

    In your previous post written 10 months ago you had symptoms of deep rectovaginal endo and it seems you have now had a diagnostic lap in what I assume was general gynaecology. You still have these symptoms. Please have a look at my post on the diagnostic lap that indicates just how thorough this procedure should be. I think it highly likely that you will have had deep endo missed.

    Microscopic or occult endo refers to that which cannot be visualised at a lap. Modern research findings indicate that in the case of deep nodular endo there can be microscopic endo some distance from the nodules that can make complete excision impossible at the time of surgery. This may be what he is referring to - i.e. he may be familiar with modern research. But if you had surgery in general gynaecology you might have had deep endo itself missed. Here are some links to modern papers on the subject.

    ncbi.nlm.nih.gov/pubmed/243...

    fertstert.org/article/S0015...

    Can you let us know what the operative report says to try and establish how thorough the lap was. We need to know how thoroughly the pouch of Douglas was examined. Deep endo that causes the symptoms you have is often missed at a diagnostic lap as it often can't even be seen at a lap if it buried beneath adhesions or outside the peritoneum. You will need an MRI to detect any nodules and this will also give an idea of whether you have adeno. Where in the UK are you? Come back when you know what was done at your lap as it sounds as though you probably need referring to a specialist centre.

    Please note that the link given from Endopaedia does not represent scientific evidence as this is the personal website of a retired US surgeon and reflects just his opinions. He does not believe in microscopic endo even though current evidence confirms otherwise. Much of the content of the website is very outdated and that paper was probably written many years ago as are many of the other articles. So it would be best disregarded as it contradicts the findings of experts in the field.

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

    Seek the advice of a real endometriosis specialist Steph.

  • Steph - you will only be able to access a specialist centre if you are in England (not if you are in Scotland, Wales or NI as you have to have already confirmed severe endo in those countries). This is why I asked where you are in the UK. But in any event before seeing a specialist in a centre you need to be fully informed and prepared beforehand as to what exactly was looked for at your lap. A very typical scenario for women with symptoms such as yours is to have a lap that only looks at the ovaries and to be told they don't have endo and it must be IBS. There should be a letter from the surgeon in your medical notes at your GP practice. Come back when you have it so we can consider further. x

  • 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!

  • Hi Steph - even though a hospital has a BSGE centre they still have a general gynae department the same as any hospital. So, for example, if a GP puts a referral through the central system for you to have a diagnostic lap you will be allocated a general gynae and the fact they have a BSGE centre will have no bearing unless severe disease is encountered at the lap in which case the woman should then be transferred to the centre. But remarkably we are coming across such situations where complex surgeries are being carried out by unqualified general gynaes in hospitals that do have centres!

  • 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!

You may also like...