Persisting symptoms after excision surgery??!

Hi everyone,

I had a laparoscopy 6 months ago and found I had endometriosis which was completely cut out in the same operation. Prior to the operation I had been in agony all day every day and had a terrible stabbing pain in two places on my left side along with a load of other symptoms. Although admittedly my symptoms have improved since the laparoscopy I haven't yet been pain free and I still experience stabbing pain in one of the places in my left side a few times every day (thankfully the other stabbing pain has gone).

However, I only found out yesterday at my appointment with my gynaecologist that apparently symptoms of endometriosis are meant to completely disappear after it has been fully removed which had never been told to me before. He said that the pain I have now is just bad periods or is something unrelated. I'm finding this hard to understand though as I still get deep pelvic pain during sex, some bleeding after sex and a stabbing pain that feels like a knife up my bum when I'm on my period that is absolute AGONY and makes me feel like I'm in labour which I have always had when being on my period and was told by my GP that was down to endometriosis. I'm just wondering if anyone else is in a position where not all their symptoms have cleared?? And wether it's true that all symptoms should be gone after my operation??

From tests I had before the laparoscopy I also know that the stabbing pain isn't caused by cysts or anything like that as I had ultra sounds and blood tests for hormone, bowel and other related illnesses and everything came back negative. Irritable bowel tablets also don't clear the pain. I'm maybe wondering if it's possible it could be endometriosis INSIDE my bowel or something?? Is that possible?

If anyone could shed any light or share similar problems to mine I would much appreciate it x

13 Replies

  • Hi are you with a general gynaecologist? Or at a BSGE centre?

  • Hi, I have private health cover and the gynaecologist I see is considered an expert in endometriosis but its not at a specialist centre or anything. Would it still be more beneficial to go to a centre?

  • Hi yes it would as general gynaecologists tend to miss some endo as they only really look at reproductive organs and don't always recognise all presentations of endo.

  • Ur symptoms sound so similar to mine as get pretty much all the same symptoms as mine your symptoms sound like rectal vaginal endometriosis and do u no if you were dealt with in a endometriosis specialist clinic or was it just general gynaecology cause I had my lap over a year ago and still no better off to be honest but I think u should get a second option as this doesn't sound like all the endometriosis has been cleared but I was told that endometriosis can come back after a year of having a laprostopy but I never been pain free after my lap as they removed endo from my womb and aheadions had stuck my pouch of Douglas to my womb but think u should get a secound option from a other consultant let me know how u get on and hope u feel better soon xx

  • yeah when I was originally referred to the specialist my GP suspected rectal endometriosis but it was actually found on the left side of my pelvic wall. Do you know if its possible that it could have been in both and he perhaps didn't see it if it was on the inside of the bowel? Your endometriosis sounds as though its more severe than mine, Im sorry you've not been pain free either! I'm lucky to have private health cover and the gynae I see is meant to be an expert in endometriosis but it wasn't actually at a clinic. Have you had a second opinion or anything? hope you get sorted soon x

  • The only person I'm seeing now is a consultant that deals in pain management I have been back to my gp as told him that my pain meds ain't helping the pain and all I get off gynaecology oh we removed it all and to pretty much get on with it not really doing much as I no that I'm getting worse but get branded a hypochondriac and get spoken to like it all in my head I'm going back to see my doctor and I'm going to ask to be refered to endo specialist clinic as I'm getting sick of not getting taking seriously xx

  • Maybe I am not the best to advice but who done the surgery normal gyn or a Endo specialist?

    If is the first one he doesn't know how this work and he may not been removed all Endo even he thinks different.

    Go back to your GP and ask to be referred back to an Endo specialist for a second opinion.You have the right to ask.

    If he removed everything you should not feel like that.xx

  • Hi, I'm lucky enough to have private health cover and the gynaecologist I have is considered an expert in endometriosis although its not at an endometriosis clinic. He says that he did completely remove all the visible endometriosis in my pelvis but yeh thats what I was thinking, surely if he did it would be better??! Thanks for your advice, I will ask about an endometriosis specialist next time I see my GP x

  • It will take some time to be referred few month maybe so my advice is to get as soon as you can.I have read here many stories similar with your one and many ladies been told that everything been clear and they should be alright or even more the pain can't come from there but from the head so is up to you to take it further.I have seen so far 5 different Drs and opinions something can differ.Good luck

  • I felt very similar to you and was told by doctors and gynae that everything was just settling down. Unfortunately it has been over two years since my lap and my bowel symptoms are worse- I can very much relate to the knife up the bum scenario!!! It's awful. If you haven't tried maybe keep a diary of symptoms for a couple months and take it in to the doctor so they know what you're dealing with on a daily basis. Hope you feel better soon x

  • Yeah its terrible isn't it!! They don't seem to understand how bad it is when i tell them about it as theyve never showed any real concern about it. Yes Im currently keeping a diary of my symptoms and have been for the last two months. Thanks for the reply, hope you feel better soon too x

  • Hi - unfortunately most general gynaecologists consider themselves experts in endo simply because it falls under the umbrella of general gynaecology. But the very term 'general' means just that. Areas of medicine are divided into areas of increasing specialty starting with the GP and ending with the professional who dedicates him or herself to a specific area of medicine such as cancer of a particular area of the body. Such professionals will often have an interest in research of their chosen area.

    General gynaecology can be considered one step on the road to specialty and will deal with straightforward gynaecological issues and must have the ability (and humility) to recognise the limitations and know when a patient needs to be referred on to someone more specialised - such as to a gynaecological oncologist or urogynaecologist. Unfortunately despite the complexity of endo this has never been sub-divided into a speciality as it should be so we now have specialist centres where patients can be referred to professionals who have chosen to make endo an area of special interest beyond the realms of general gynecology. These centres accept all stages of endo but are particularly vital for the treatment of severe endo, such as that affecting the bowel area, since the surgery involved is complex. The surgeons have to undergo at least two years' extensive excision training over and above what general gynaecologists do before being allowed to operate on such areas, but in practice should have many years of experience.

    You have all the signs and symptoms that are typical of deep rectovaginal endo, with pain often predominating on the left side, that must only be dealt with in such centres and is often not even visible at a lap because the nodules are often in the rectovaginal septum that is outside the peritoneum. In order to identify these it is necessary to do a rectovaginal exam involving fingers up the vagina and the rectum at the same time to carefully palpate the whole area to feel for nodules. This can be very painful so access can be limited when the patient is awake but if nodules are found then an MRI would follow prior to the main excision surgery. In any case every diagnostic lap should involve this examination under anaesthetic so did you have this done either before or during surgery to rule out nodules?

    It is almost certain that your surgeon had not done the required advanced training to be qualified to deal with the type of endo you have symptoms of otherwise he would be in a centre. Do you know where it was removed from and whether this was really done by excision or ablation?

    Unfortunately when seeing a consultant privately you are still seeing an NHS consultant but are just paying for it. They don't have greater qualifications because they are private. Click on my name and have a look at my post on RV endo and on how to find a specialist centre.

  • No I don't believe I have ever had that done, I have just had pelvic examinations and a laparoscopy, no one has really ever followed up my concerns that I may have rectal endometriosis. I was told the endometriosis in my pelvis was excised with a laser and that all endometriosis there is completely gone.

    Thank you so much for replying your post has really helped me understand it all better and I'm 100% going to talk to my GP about being referred to a specialist centre!

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