3rd Laparoscopy next week

[dani191091]

Hi everyone,

Before I ask my questions I should give you a little bit of background.

When I was 18 I began having severe pain with my periods every month, my periods became extremely heavy, they could last over 2 months at a time and intercourse became unbearable because of the pain I was in. I went to my local A&E in August 2009 where they performed an emergency laparoscopy. When the surgeon came to see me following this surgery I was told everything came back completely normal apart from having adhesions and a very small cyst which they drained. Adhesions to me seemed very strange because I'd never had surgery before so I didn't really understand what could cause them.

The pain continued monthly for over a year and in October 2010 I had a scheduled laparoscopy under a different gynaecologist who performed my first, but once again nothing was found and everything looked normal except another small cyst which was drained and adhesions which I was told at this time could of been caused by my first surgery but I made them aware that there was already some present before my first batch of surgery.

Since then my pain has been on and off until 2013 when I had the coil fitted which was the worst pain I'd ever experienced constantly until it was removed 6months later.

I was then put on prostap in September last year because the pain became constant and although I have been bought off the prostap and have been in severe pain ever since, I have my 3rd laparoscopy scheduled next Thursday.

I'm so nervous because although I don't particularly want a diagnosis of endometriosis I also don't want doctors to think I am making the pain up.

I've also been referred to a gastroenterologist because when I'm having my period (sorry if tmi) I'm also bleeding from my bum at the same time too, so they want me checked for endo inside my bowel by having a colonoscopy.

I just wanted to ask if anyone has been in a similar situation or if anyone is going through anything along these lines.

Thanks for reading xx

[cala]

Hi I've just been booked in for my 3rd on 24th..He's also checking for endometriosis in the bowel.

Really not looking forward to it but at least he will do it right this time not like the other times.

Here if u need to chat. X

[dani191091 in reply to cala]

Thanks for the reply Cala. Same to you too if you need a chat.

What's worrying me the most is the fact that I've been told so many times the pain is in my head but I know the bleeding is not in my head so there must be something causing it.

[cala in reply to dani191091]

If ur in North West UK. There is a great doctor here who I'm under. Took me 6 months to get diagnosis. X

[Sarahhhbee]

Hi Dani, sorry to hear you've had a rough time. I'm in a very similar situation. I'm 26 and had all this fiasco going on for 10 years. I had my 4th laparoscopy last week and they have all been "normal". I'm in agony very often and many doctors seem to dismiss it. I'm now looking at trying to get a referral to a BSGE centre as every doctor I've seen is convinced it is endo, but they "can't" diagnose it. I hope your next one goes well for you xx

[GrittyReads]

It sounds like you should be being seen by a specialist 'Endo' consultant. Even very good general gynaecologists are far more used to dealing with all sorts of different gynaecological conditions, and may not be particularly practised at finding, identifying, and then fully removing all of the different sorts of endometriosis, from all the difficult to see - and find - places, where it can be found inside the abdominal cavity. A large % of the posts on here are from people who have only been passed onto general Gynaes, who have missed or not fully removed their Endo.

I suggest you have a talk to the trained Advisors at 'Endo UK' they host this site: link to their website at top of this page. There you can find contact details, as well as lots of info on Endo. It's likely you need your GP to refer you to a BSGE Clinic (Specialist Endo clinics, staffed by highly trained Gynaes who only deal with endo, and backed up by bowel and urinary etc endo-surgeons, who are able to deal with removal of endo from these regions. The BSGE Clinics are all around the country, often attached to existing hospitals, and they are the experts at finding, identifying and removing Endo.

Search for links to BSGE centres on the 'Endo UK' site and search around on here, too, for info and other women's stories about their experience there (Although as Endo UK is a charity, we are not supposed to name hospitals or surgeons one here. GPS are supposed to know the protocol for referring women to BSGE clinics but a lot are not doing this.

Also have a look at posts by Lindle on here.

I hope this helps and you are helped soon. Sadly, Endo, like a lot of other (women only??) autoimmune conditions, is one of those things where we have to quickly become our own best experts. So I would really search out all other Endo Groups - there may even be a support group near you.

[dani191091 in reply to GrittyReads]

Thanks for all the replies. I will see how the next lap goes on Thursday and then see if I can referred not one of the bsge clinics. I have been dealing with this since I was 17 and am now 25. For me it's impacting on my daily life. I am at uni studying to be a mental health nurse and have had numerous days off with uni now questioning my ability to practice aswell, just need some answers.

[chezza1969]

hi hun yes ive had all the same as you then i had lap which confimed ive got endo and a lot off it i go for my surgery on 31st march and i carnt wait ive also sufferd from back pain for over 20 years went bk pain clinic walton it turns out had bulging disc but the pain wasnt coming from them so iam just hopeing its from this endo it will be the new me if it is so wot am trying to say yes make sure you ask them to exsamine you properly and not fob you off hun coz thats wot they do xx