Advice? Help !

I'm 21 years of age was diagnosed with having endo 7 months ago, after being poked and prodded for 6 months prior to this, they diagnosed me without a lap and since have given me a diathermy? (Having cells on the wall of the vagina burnt off), zoladex injection which seemed to ease the symptoms but I swelled like a balloon on it and they discontinued my use on it, an attempt to put a mirena coil in in which I almost passed out and broke the nurses fingers who's hand I was holding before they'd even tried to go into my uterus as my vaginal wall is so sensitive, I've now been put on the cerazette pill which is great because I have no periods but my condition is worsening as it is now impossible basically for me to have any intimacy with my long term boyfriend I cried with pain last time we tried to have sex :/ my next consultant appointment is next Tuesday and I really am at my wits end it's ruining my relationship, my mood swings are awful and I'm constantly drained and I have no idea what the next step is, someone please advise me what to do because I really don't have a clue ! I also don't think it helps its a 2 month wait between each hospital appointment :/ x

9 Replies

Hi there,

so sorry you have been through this hell.

Are you being treated by a consultant who knows what they are doing? Sounds like you're not. The bsge have a website of endometriosis centres in UK who are accredited. Research has shown that laser treatment is often ineffective in removal of endo, and what you need is deep infiltration excision. Sounds like you need second opinion!

The hormones they are giving you won't cure the endo just keep it at bay with side effects. Surgery performed by an experienced surgeon will really help and could take it away all together.

Through nhs choose and book you can ask your Gp to refer you to an endo centre registered by BSGE. If long waiting lists and you can afford it, I would recommend you pay privately to see a consultant on BSGE list then pay for treatment privately or get it on nhs

good luck

Jemma x

Hi I agree it doesn't sound like you are being treated correctly at all! You need to have a lap to get rid of any endo and to make sure that's what you have otherwise you are not going to get better, I think you should get a second opinion, as with the lap they get temporarily get rid of the endo and will also be able to tell you what they found and where e.t.c

How much time do you have to have off work though after a lap? X

I work as a chef so I have a very physical job with a lot of long hours and heavy lifting x

Hi there, I took a week off work but felt ok after about 4 days. X

Forgot to say - although I felt much better pain wise, I was so drained and tired for about a fortnight. Unlike yourself my job wasn't a physical job. If your job is so manual you may need much more time to recover. X

Okay, thanks for the advice girls :) x

Hi x From what you say, I would definitely ask to be referred for a second opinion and ask to have an MRI scan for adenomoyosis if you have not already. The pain and other symptoms you describe could well be the condition which greatly affects the uterine wall and the coil will do nothing but cause problems and the zoladex will help to start with only. For more info, please visit the main adenomyosisadviceassociatio... website x Danielle x

Hi I had nearly 3weeks off after my lap! And my next more intensive op iv bn advised to have atleast 4-6weeks I presume it depends how much work needa to be done x

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