Fight to have laparoscopy: Hi. First time... - Endometriosis UK

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Fight to have laparoscopy

Larrie7 profile image
11 Replies

Hi. First time posting here. I am on waiting list for a lap. The gynacologist thinks i have endo and am taking the pilll back to back for every 3 months so I only have 4 periods a year. The Gyna I saw recently didnt want me to have a lap done and wanted me to have physio for my back pain. Depsite the fact I've already seen a physio who advised that I didn't need physio. Anyway since last june ive had back pain, excruciating period pain, fatigue, pelvic pain and need to go the loo a lot more. I'm 33. When I was 14-16 my mum used to pick me up from school every other month as my period pain was so bad, so thats why i went on the pill when i was 16. The attitude from my gynacologist really shocked me, she was adamant I didn't need a lap. I ended up bawling my eyes and getting angry until she changed her mind. I also have had IBS for last few years that hasnt repsonded to any treatment whatsoever. I asked if that could be related and she said that i'd only have IBS symptoms when I'm on my period and not constantly. I asked about the bladder issues and she said the cystoscopy would show up endo on the bladder ( i dont think it would). And she said what do you want to happen if they find endo anyway. So i said they can remove it. And she said there's no point as it always comes back anyway. I am so shocked at her attitude. My health has been awful for the last few years and I just want answers. Why is it so hard? Ive had to drop down to part-time uni course as I've been so ill. I'm in pain, and constantly tired. So why not just do a laparoscopy to find out. Does anyone else feel like they're making you out to be a hypochondriac?

11 Replies
JeanOsborne profile image

Hi you need to to seek a referral to a BSGE centre, as she doesn't know what she's talking about. Firstly a lap is the only real way to confirm endo. Ibs symptoms can be constant but tend to get worse around period. A cystoscopy would only show endo if it has completely infiltrated the bladder. If endo is completely excised then it shouldn't come back. I would advise you don't let her do the lap but seek a second opinion.

Larrie7 profile image
Larrie7 in reply to JeanOsborne

Thanks :) That is so reassuring to have you say that. These doctors can make you feel even worse. The nearest BSGE centre to me is 40 miles away, do you know how i go about getting a referral to there? She was so reluctant to do the lap in the first place that I'm not sure she'll want to refer me.

slaccie98 profile image
slaccie98 in reply to Larrie7

Get your GP to refer you to the centre it doesn't have to be the gynaecologist. Also put in a complaint about her attitude and take someone with you next time you have to see her. I hate doctors like that. I'm lucky now as I've been seen by a lovely gynaecologis.

JeanOsborne profile image
JeanOsborne in reply to Larrie7

Hi where abouts in the uk are you? If your in England then there is patient choices. Which means you can go to your GP with the name of the specialist you want to see and ask for a referral to to them. If you're in Wales or Scotland then things are a bit different.

Larrie7 profile image
Larrie7 in reply to JeanOsborne

Unfortunately I'm in Wales. I might phone my GP and talk to him, despite the gynacologist being horrible, my GP is lovely. I feel like he at least listens to me. So I might ask him for advice on getting referred. Thanks :)

Julieoolie profile image

I think your gynaecologist is pants! To be blunt. My doctor referred me for a lap straight away when I was suffering with my bowel more sore on a period. It's one of the main symptoms. Definitely go and see someone else.

Larrie7 profile image
Larrie7 in reply to Julieoolie

I don't understand how it can take so long to be referred for a lap. .Since June I've had lower back pain, frequently need to wee ( like 20 times a day). pelvic pain and ended up in A and E one night cause the period pain was so excruciating. Plus have had IBS for last 2 years (might or might not be related) . Like surely with those symptoms being referred for a lap is one of the first things they should do. Anyway hopefully i'll have the lap done and then at least i'll know one way or the other. Thanks Julie, i thought she was pants too so nice to know im not going totally crazy :)

KatyAyesha profile image

I completely understand where you are coming from,the gynaecologist I saw was useless,she didn't listen to a word I had to say and even got the information wrong in the letter she sent to my GP,she literally told me to go on the pill,and gave me a leaflet on endometriosis.It took me 2 and a half weeks to get hold her and finally tell her that I wanted to be put on the waiting list for a laprscopy as I want to get pregnant,it just seems like I am having to fight for everything too!Because they can't see the pain it's like is doesn't exist.Hope you get it sorted x

Larrie7 profile image
Larrie7 in reply to KatyAyesha

That sounds rubbish. They just cant seem to be bothered with endometriosis. When I was arguing with the gynacologist i said i wanted the lap and also said i'd like to know if i can have kids or not. (im 33). She asked me 'well have you tried?' and i said no as I'm gay (makes it a bit harder) . she didn't say anything to that. But i was pretty shocked at her attitude. It really is something you have to fight for and it is wrong. I've been stalking these boards for a while though and it is nice at least that we can share stories here and know that we're not alone :) I feel a lot better from all the replies on this post

mactwin profile image

I had to fight to have laparoscopy, in which they found endo all over my bladder and rectum/bowel as well as my ovaries, which is causing infertility and all the pain of endo. My pain has come back 6 months later because my surgeon (gyno) was not expecting endo on my organs, so did not do the surgical prep that they'd have to do for bowel/bladder surgery. He took off the endo in my pelvic wall and my ovaries and I was pain free for 6 months.  I am now having another surgery (this time excision with a specialist) within the next 6 months to take it out of me and off my organs. I urge you to go to a specialist and get the surgery through them the first time so you don't have to go through 2 surgeries in a year.

ckhane profile image

I'm so sorry that you had this experience! Unfortunately this has happened to me several times. The first doctor I went to for my endo symptoms, which included throwing up so hard I was throwing up blood, told me that I should either go on birth control or suck it up. I sucked it up as she told me to do but it kept getting worse and I eventually had 2 endometriomas that were 10cm on my ovaries. I eventually found a doctor that listened to me and helped me through my problems. I would say to find a different doctor as my doctor has recommend to have the endo removed and that it is unlikely to come back as long as you are on birth control in which you do not have a period. I hope you find a doctor that is nicer and believes in you. Best of luck!

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