Persisting symptoms after excision surgery??!

[HH811]

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

[JeanOsborne]

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

[HH811 in reply to JeanOsborne]

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?

[JeanOsborne in reply to HH811]

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.

[Nicolahunny]

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

[HH811 in reply to Nicolahunny]

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

[Nicolahunny in reply to HH811]

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

[mackanzie]

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

[HH811 in reply to mackanzie]

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

[mackanzie in reply to HH811]

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

[Hidden]

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

[HH811 in reply to Hidden]

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

[HH811]

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!