Lap clear of endo: Hi I am 31 and started... - Endometriosis UK

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Lap clear of endo

Bexsiow profile image
13 Replies

Hi

I am 31 and started my period when I was 9 I have always had very painful heavy and clotty periods that are irregular the doctor as tired me on the pill injection coil. I have bloating and pain not just when when period is due but most of the time which painkillers do not touch also I get alot of pain during sex. And I'm tired most of the time the gp has treated me for ibs but this did not help and they ruled it out. I had a lap done 10 years ago with was normal. Just had another lap done and again they said no signs of endo but I did have some adhesions? Also said that my pelvis was very narrow and that my womb was facing backwards but said this was not a cause of pain and that it was ibs and no follow up appointment needed. Don't know what eles to do the surgeon didn't want to listen when I said the the gp had ruled ibs out.

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Bexsiow profile image
Bexsiow
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13 Replies
Nikki84 profile image
Nikki84

Was the lap done at a specialist endo centre or by normal gynaecologist?

Bexsiow profile image
Bexsiow in reply to Nikki84

Hello it was done by a normal gynecologist don't know of any specialist near me

Nikki84 profile image
Nikki84

Get online and try to find your nearest one and then go back and see your gp and get them to refer you there for second opinion x

Bexsiow profile image
Bexsiow

I'm on the isle of Wight so not sure where the nearest one would be i will have a look thank you for your reply its starting to get me really down all my gp has said would be to have a hysterectomy ! X

Dee11 profile image
Dee11

Hi,

I don't have any advice on what to try, but just wanted to say I'm in the same situation as you. Had my first lap in June and was told no endo but lots of scar tissue and adhesions which had fused my bowels, ovaries and a few other things together. I know I felt really confused after because like you they said ibs, which it's not.

I'm going to go back to my gp and ask for another referral, I'm also debating asking the hospital for my full report on the surgery so I can get a bit more info than what was in my discharge letter (it didn't help that the doctor told me what had happened as I was still coming round and I couldn't remember what he said properly, then never saw him again before I was discharged). Not giving a follow up appointment is ridiculous in my opinion. Are you able to ask to be referred even to another consultant if you're not near a specialist centre?

Sorry I can't offer any advice but just wanted you to know you're not alone x

Bexsiow profile image
Bexsiow in reply to Dee11

Thank you for your reply I have a gp appointment next week so going to speak to them about seeing someone eles. My surgeon didn't even come and see me the nurse told me what he had written and i was given no discharge letter not even told about when the dressing need to come off all I had was a letter in the post 2 days later to say what he had found and that he had removed some adhesions x

dawntildusk profile image
dawntildusk

unfortunately this is quite common especially under general gynae. if i was you i would contact the secretary and say you want a follow up appointment to discuss the op and also what tests they can do as they havent really removed anything and that your symptoms will obviously persist. im not gonna pretend that you wont have any resistance from them but be firm and dont take no for an answer. they have a duty of care. have u had an mri before? if you read my story it has similarities to yours and when i was at this stage it was an mri that confirmed what they had missed. x

Bexsiow profile image
Bexsiow in reply to dawntildusk

Hi I havnt had an mir but I will speak to my gp next week at my appointment and ask for a refurel to a different hospital other then on the isle of Wight as u don't think they are very good over here thank you for your reply its nice to know I'm not the only one as they make me feel like I'm making it up and should just accept the fact its ibs which I have had treatment for and the gp has ruled out x

lenner76 profile image
lenner76

Hi, your story sounds very similar to my own. I was diagnosed with endo 15 years ago and had excision during a laparoscopy. I have been really struggling again the last couple of years and finally had another lap last Thursday, very surprised when I was told there was no endo and that I no longer had it! However he did notice that I had very enlarged veins around my ovaries and is sure this is what is causing me pain/ibs symptoms. Have now been referred to a vascular surgeon for vein embolization. Do some research on pelvic congestion, it can get missed during scans and lap as when laying horizontal the veins aren't as noticeable as when standing. It's definitely something to get ruled out.

Bexsiow profile image
Bexsiow in reply to lenner76

Hello thank you for your reply I will defo mention it to my gp next week

Tillyfloss profile image
Tillyfloss

hi. How you feeling? Endo is very frustrating as it's so easily missed. I would get on the phone for a follow up and if they won't do you have a pals system? My friend complained about not being giving enough feedback after an op and got an appointment that way.

it is easy for consultants to miss endometriosis if they aren't experienced with it, my grade4 deep infiltrated Endo with extensive adhesions and a frozen pelvis was missed both on a emergency op for a ruptured cyst and a ct scan and mri scan. I ended up at a bsge centre due to the cysts tricky location and even the specialist there was hadn't found anything on the scans or previous theatre notes to indicate the mess I was in and said he'd been over the scans again and still couldn't see the trademark signs he would expect to see so even the specialists in endometriosis don't always pick it up. My point being keep going back and asking to be seen again as they could easily have just missed it. In the meantime what pain relief plan do you have in place? Have you tried any diet changes? Xx

Elselih profile image
Elselih

Hi,

A few people mentioned specialists endo consultants, here is a link to find your most local team: bsge.org.uk/centre/

Good luck x

staceymacg profile image
staceymacg

Hey!! I don't know if it will be much help but I'm in a very similar situation.

I had my first lap in June by a general gynae and was told when I woke up that all appeared normal. No follow up needed.

I was devastated. 7 years of symptoms and I was really hoping for some answers.

I went back to my GP after some research and I'm now seeing a very highly regarded specialist in Paisley on Monday after just a few weeks of waiting.

I am really hoping this app leads to further surgery because like yourself, I really feel something was missed as the surgeon was not specialised in endo.

Also, I paid to see a private specialist and it was a complete waste of time and money!!

I've got everything crossed for this app and I hope you get seen to soon! Xx

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