MRI results : Hi everyone . Hope everyone’s... - Endometriosis UK

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MRI results

RJB212121 profile image
13 Replies

Hi everyone . Hope everyone’s doing ok dispite having these awful symptoms 😩. I’m just wondering if any of you have had a diagnosis through MRI ? I had an abdominal and pelvis MRI Wednesday. No results yet but I know they said it can take up to 8 weeks atm just for results 😩. I’m praying they pick up something as next step is laparoscopy but there’s a 2 -3 year waiting list for that . Really hoping for a diagnosis sooner . But i know sometimes endometriosis doesn’t even show up on MRIs . Such a pain to get a diagnosis isn’t it 😢😩 <. EDIT > two months later I have had my MRI results. Adhesions shown with bowel and womb . Scar tissue on ligaments. Suggestive of endometriosis and endometriosis on pouch of Douglas and fibroid in womb . 😩. In a way I am just glad it shows something and justifies the discomfort and pain im in . But what to do next ?? !! I’m seeing the gynaecologist Monday . I’m sure he’s going to want to put me on injections to induce menopause 😩as he’s already mentioned it over the phone and sent me information leaflets. Really not sure I want to go through that I personally would rather surgery but waiting list is so long . Any positive results with anyone on this type of hormonal therapy? I’m suffering enough with hormonal Symptoms I’m worried about taking anything like that. But obviously at the same time I need something to help ease pain and discomfort. Hope you’re all coping with everything. So hard feeling like this 😢

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RJB212121
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13 Replies
AllthatGlitters profile image
AllthatGlitters

Hi I was diagnosed with Adenomyosis via MRI and endometriosis after have a laparoscopy. Been on decepeptyl injections, the positive is the bleeding and pain stops. Negative for me was weight gain, bloated, very dark moods and after a few months decided to come off of it. Don’t let me put you off as others have a very positive experience of these menopause injections. My consultant said it would mimic what a hysterectomy would be like for me. X

RJB212121 profile image
RJB212121 in reply toAllthatGlitters

Hya , thanks for replying . I know I don’t think I’d cope very well I haven’t had any luck with the pill . I already have the bloating really bad , and hormonal, feeling sick moods not the best with it all in the first place . I really don’t want to feel these symptoms even more intense artificially. I don’t actually suffer with heavy periods, I bleed for around 10 days light then heavier for a few days and quite a lot of small clots pass . It’s the pain and discomfort I can’t deal with along with all the other symptoms. Hope you’re feeling a bit better now . How long did you have to wait for surgery? Xx

AllthatGlitters profile image
AllthatGlitters in reply toRJB212121

I had to wait a year for surgery, it’s taking so long at the moment x

vizzle_01 profile image
vizzle_01

Hello, thanks for updating with your MRI results. I'm glad you got some answers to your pain and can now think about the next options 👍I had a pelvic and abdominal MRI on 23rd Feb (NHS) and still waiting for the results, which I have convinced myself will show nothing as the gynaecologist is not a specialist in endometriosis and has already f***** up my laparoscopy (before doing any MRI) so I can probably never have another 😞

Prettythings1 profile image
Prettythings1

I am glad you have your MRI results and I’m glad they show something that can give you a bit of an answer! Waiting is awful I’m waiting for my MRI results I’ll get them at the end of the month

Like you I am reluctant to go down the Hormones en route I have epilepsy onto so not sure I can,

Have they offered you an alternative to hormone therapy xx

Minnie153 profile image
Minnie153

Hi, I’ve had injections 4 times over the course of 20 years. The first 3 times worked a treat and I didn’t have the hormonal ad back therapy the first two courses, but did for last two - I really recommend the adback therapy! The last time didn’t work as it was a bridge to surgery (hysterectomy & oophorectomy) due to constant prolonged bleeding. The bleeding did not stop, but I had adenomyosis and I believe this and perimenopause was the cause of this. I’ve had my hysterectomy now.

So all in all I’d recommend; weight gain can be an issue that happened on Zoladex, but it didn’t on Prostap. The weight gain comes from appetite changes so you could be proactive with that (I didn’t 🤦🏼‍♀️😂).

Good luck xx

Pureunicorn profile image
Pureunicorn

Hi, I hope ur not feeling too bad, I've just come off decapeptyl monthly injections (on them for 2years) as I've just had my surgery. I can honestly say without the injections I dont know what I would have done, I did take HRT which I'm still on, if ur surgeon is suggesting trying it I would say maybe it's worth it, u need to give them at least 3 months as it can take a while for everything to settle down, I know they dont work for everyone but it's got to be worth a try over constant pain and all the other things that come with endo! Good luck with whatever u choose to do xx

Sammyjam profile image
Sammyjam

I have no experience in this treatment but was very interested in your feed ! I have just had an ultrasound it showed endo ! I’m still waiting to see the Gyno ! Did u have an ultrasound first then an mri ! And if so how long did u have to wait for the mri !

RJB212121 profile image
RJB212121 in reply toSammyjam

Hi Sammy , I had an two ultrasounds done one December 2020 as in pain and massively bloated and one in July 2021 as still in pain and all the symptoms, I had blood tests and my Ca125 level came back high so was sent for the second scan Both showed nothing. I was then referred to Gynaecologist had that appointment in November 2021 he then ordered an MRI for me I had that end of January this year results came back 3 and half weeks later , and I have my first face to face appointment tomorrow. Even though iv suffered for years . It’s since December 2020 that endometriosis was ever mentioned to me . Before that iv had loads of investigating but never for endometriosis. Hope everything works out ok for you xx

Popipep profile image
Popipep

Hi, same diagnosis as you and same period situ , I had two lots of the injections years apart and although the first two months weren't easy with hot sweats it was still better than the pain and bleeding. They give the injections also to help shrink organs and stop endo growth to make the surgery easier. I'm post hysterectomy and still have endo issues, I would have the injections again if I could! Good luck for Monday and if they offer HRT with the injections, take it x

Katielaa profile image
Katielaa

I was also diagnosed through MRI. I had two, one NHS and one private. The NHS took 11 weeks and was vague but the private one shows severe diffuse adenomyosis, stage 4 endo and ovary, cervix and uterus adhesions to sigmoid colon. Waiting for full hysterectomy and bowel surgery in May xx

Natsc profile image
Natsc in reply toKatielaa

Hi i hope it all goes well for you, sounds awful thi g to have to go through. Do you mind me asking, are your ops planned at the same time, and are you going private for these or back to nhs, thank you xx just been waiting years myself and at a loss, may have to go private if the wait and pain carry on. Thank you

Max5000 profile image
Max5000

Hi. I was diagnosed with a large ovarian cyct in August 2020 in private clinic. Then NHS put me on a waiting list. I couldn't wait. Pain was awful. So I decided to go to my country, Kyrgyzstan. In December I was operated there . And It wast just a cyct, endometriosis very bad. Operating was 2 hours. 5 days I spend in the clinic then staying at home for a month. Everything was good. After 1 month I returned to London. My doctor prescribed me Vizanna for 6 months. After that I met a doctor here in October 2021 and she prescribed me Cerazette. 5 months I felt ok. A bit acne, put some kg. It's alright. But 2 weeks ago I have started bleeding and still. I don't know what is it. I passed blood test , going to see a doctor soon. So what I want to say, if you can go to your country, go, I mean if you wasn't born here.

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