Confused and still sore after laparoscopy

[Dee11]

Hi everyone,

This is my first post and am really just hoping that someone else has had a similar experience to me (partly so I know I'm not going crazy!)

Since I was about 15 I've had irregular heavy periods, pelvic and abdominal pain. As I got older I then also started having pain and blood with bowel movements whenever I was bleeding, and then also really painful sex.

Doctors were first convinced I was either pregnant or had an sti and was too scared to tell my mum and dad (completely untrue) then after taking at least 4 pregnancy tests in one hospital trip, they eventually decided i just wanted time off school, gave me the pill and told me that would be me, although did admit I'd had some cysts and they had trouble finding one of my ovaries in a scan (which I was told was really normal).

For years I had to just put up with it, then when I was about 21 they finally referred me to another gynae who told me he suspected it was endometriosis but that due to my age he didn't want to do surgery on me. At that point he told me to take the pill continuously with no breaks and, again, that was me left to just cope with it.

Several consultants have told me since then that they also highly suspected I had endometriosis but it wasn't until June this year I had my first laparoscopy..... which is where I'm now really confused. After waking up from surgery, the doctor told me I didn't have endometriosis but they did have to laser away (sorry can't remember the proper term they used) a lot of scar tissue, and that I also had so many adhesions caused by the scar tissue that my bowels, ovaries and a couple of other organs had actually all fused together and had to be cut away and separated. No one knows how I got the scar tissue or adhesions, as I've never had surgery before, and they aren't going to investigate any further.

I had a longer recovery than expected: infected wounds, a kidney infection, a small tear in my bowel, and then chicken pox meant I was off work for around 6 weeks. After all that I was kind of hoping that would be me miraculously healed....... but I'm far from it. I still get horrendous pain, a lot of it concentrated on my right side, and even more frequently than before I'm getting so much pain that I can't sit down or put any pressure near anywhere down there. I'm also still bleeding but they inserted the mirena coil while I was in so I think that's to be expected.

I'm now at the stage of having no idea what to do. I'm in so much pain and no painkillers are working for me. I had to leave work after only a couple of hours today and feel terrible about missing it again. I'm trying to get back to see my gp, but our surgery is a nightmare and I can't even get an emergency appt until next week. And I'm so frustrated that I feel as if I'm just back to square one as no one can tell me what is actually wrong with me or if I'll end up with adhesions and scar tissue again.

Sorry, I know this has been such a long post (thanks if you made it through) but please tell me I'm not going completely crazy and someone else has had this too?

[Maxi72]

Hi Dee

This is my first time on the forum but read your post and wanted to get in touch. Has anything changed since your post? It sounds like endometriosis so how do they explain the findings during surgery if it's not? I'm wondering if your pain has reduced at all now?

[Dee11 in reply to Maxi72]

Hi Maxi,

I haven't actually had an explanation at all as to what caused any of it. My gp can't find anything in the letter she was sent and i wasn't told anything after the surgery. Tbh I actually didn't even see the doctor before being discharged, a nurse handed me my letter and off I went, so didn't even have a chance to ask. Also got told there would be no follow up appt either since he said there's no endo so can't ask then. I'm totally clueless.

The pain hasn't gone down any, but I don't think that's helped by the fact that all doctors ever give me is either a stronger strength of co-codomal or ibuprofen than what they sell over the counter because they think that should be enough. I really do feel as though I'm back to how I was before surgery with no signs of them moving forward with anything.

[Maxi72]

That simply does not sound right. Your GP must have a discharge letter detailing a diagnosis and details of the surgical procedure that you had. If you live near a BSGE specialist centre then I would fight for your GP to refer you there for a second opinion. If the pain has a cyclical link then painkillers alone will not be the most effective approach.

[GrittyReads]

Talk to the trained advisors at 'Endo UK' who host this site. There is info at the top of this page which should give you contact details for phone or email.

The set of circumstances that you describe is appalling and should not have happened. That the surgeons described scar tissue and the fusion of abdominal organs and tissues suggests Endo, but general gynaes do not always recognise the various different types of Endo tissue.

Maxi is right in suggesting that your GP needs to refer you to a BSGE Centre, but as they take only more serious cases of Endo (which is what yours sounds like) you do need to get a full formal report from the surgeons. Ultrasounds do not always show Endo tissue, transvaginal ones show more, but laparoscopies are the main means of full diagnosis, just that so often they are done by general gynaes who just do not know enough.

Barrage your GP practice and maybe the consultant's (who did the Lap) secretary to get a full report. They have to provide this! Also, try to read around as much as possible: on here; on the 'Endo Uk' website, on US and Canadian Endo websites, and there is a Facebook group ... err, Endo Revisited (?) talk to the founder there if you can ... Linda??

Sorry this is not immediately helpful, but private message me if you need more info.

[Dee11 in reply to GrittyReads]

Hi, sorry for such a delay in replying to this but thank you so much for your response - it's good to know I'm not just imagining that things aren't quite right after it all. There's no BSGE centres near me unfortunately but I'm going to take your advice and try to get the full report as opposed to just the discharge letter and hope something in there makes sense. I'll be checking those links out as well!

Thanks again x

[GrittyReads in reply to Dee11]

Your GP (sadly) does need to be the one to refer you, so the best idea is to get advice from someone (eg 'Endo UK') on being able to tell him, or another GP at the practice, what the protocol is that they are 'supposed' to be following. Quite a lot of people on here do put up with travelling to some BSGE Centres, as even they have varying reputations. Also, just keep learning about Endo. Like a lot of 'Wimmin's Issues' it is one of these conditions where we almost have to become our own best experts.

Hope you get some thing sorted soon.

Take care.

Gritty x