Finally got a diagnosis : Hi everyone. I... - Endometriosis UK

Endometriosis UK

70,131 members51,941 posts

Finally got a diagnosis

Awwy profile image
Awwy
3 Replies

Hi everyone.

I hope you are all as well as can be. So my journey hasn't been easy like so many of you I can identify with the struggles. 2 years ago I had an MRI scan as I was in so much pain that I kept passing out. On my 4th visit I got a general surgical consult who ordered it. I found out I had deep endometriosis (DIE) that was extensive. I was referred to a gynecologist. Long story short I was put on GNRH analogues and told that my only option was a hysterectomy.

I moved to a BSGE hospital and got a second opinion. The care was much better. I finally had a cystoscopy and a laparoscopy. I feel validated with what has been found but also lost. I am waiting to hear what the plan is. Does anyone else have endo this extensive? How do you live? I am struggling.

The findings were:

Cystoscopy

4mm bladder mucosa

Endometriotic lesions on post wall away from ureteric orifices

Left ureteric opening thickened

Laparoscopy

Extensive adhesions of the large bowel all over the uterus and pelvic walls (frozen pelvis)

Sigmoid colon adherent to the uterus and caceum pulled up

Utetus is fixed with very limited mobility antirversion was not possible

Pouch is Douglas completely obliterated

Ureters were not identified

3 large Endometriotic nodules on UV fold

Widespread superficial endometriosis all over pelvis

I think im existing day to day not living. Any support advice much appreciated. The surgeon who I have been under told me he is leaving and im devastated as he was the one who has actually believed me and I am scared of who I'm going to get next. I have had dire experiences.

Thank you

Written by
Awwy profile image
Awwy
To view profiles and participate in discussions please or .
Read more about...
3 Replies
Cailleach profile image
Cailleach

I am sorry your journey to a proper diagnosis has been so difficult, but at least you now seem to be in the right place. Even though your doctor is leaving his other colleagues should also have specialist knowledge and experience as they are part of the BSGE. You have overcome the major hurdle of getting a proper diagnosis too.

Can you ask if he will draw up a treatment plan before he leaves, or if he can let you know who will be taking over your care? Can you at least get a contact person in case your symptoms worsen while you are waiting to be seen?

The treatment options they could offer will I guess depend on your age, if you want to have children in the future and how the condition if affecting you. Given how extensive your endo is, if they were doing surgery they are likely to want additional specialist support such as a bowel surgeon also being present.

In the meantime can you ask them about effective pain relief -especially if you are going to have to go on a waiting list for treatment. Your GP might be able to help, but the BSGE may also have a pain specialist attached if you have not been able to control your pain with the medication your GP has prescribed.

I will be honest, it is a hard slog. But some of that is actually being heard and getting treated, and hopefully that is happening for you. It helps to have supportive family and friends -even if it is a few people who ‘get it’ and understand when you are unable to do stuff, whether at home or social engagements. I think you need to be kind to yourself and not feel guilty or push yourself into doing too much and then feeling worse. That can be a hard balance to strike sometimes. You may have to adject your expectations of what your life would be and that can be very hard. This has been my experience anyway.

Hope you continue to have a good service from the BSGE and have some improvement though xx

Awwy profile image
Awwy in reply to Cailleach

Hi Cailleach

Thank you so much for your reply. I have an appointment next week, as long as it doesn't get cancelled I will ask those questions.

In terms of pain management I was initially put on Prostrap and then zoladex. I have been on them for 2 years now. Id rather have the hot flushes etc than that pain.

Initially it was ok but what im finding now is that the pain is there not in that I wish I would just die pain but more its there im used to it. Cramping, back ache, sciatica, going to the toilet feels like im having a baby.

Over the last 2 years I have become less mobile and this has increased my weight a lot. I keep getting told that weight gain isn't due to the zoladex or prostrap.

Im 41 so dont want anymore children. I have very little support. Im a single parent with 2 young children and left an abusive marriage. No family or friends that understand the extent. I work full time mostly from home luckily I have had an understanding employer. I have worked there for 21 years so I guess thats why they have been so flexible.

My memory is rubbish. I dont have anyone to talk to. I am seeing a private psychologist to help with my mental health. I was referred to the pain clinic in August and not had anything back.

Think you are right I just need to be kinder to myself.

Take care and I really appreciate your reply.

Cailleach profile image
Cailleach in reply to Awwy

I think seeing the psychologist is a great idea, I was thinking when I replied about mentioning counselling - it can help to talk through what you’re going through with someone neutral and not a friend/ family member who will feel bad for you/ feel guilty about not helping more.

I did struggle with being honest with people I am close to about how the condition was affecting me. But I did do it with those I felt would be most receptive and it does mean now I can just use short hand like ‘I am having a bad day’ and they understand what I mean.

The memory issues could maybe be from the Zoladex - I know I had brain fog when I was going through the menopause. Just have to write everything down!

Don’t worry too much about the weight gain but do try to keep your body moving as much as you can.

I think I’ve experienced a lot of what you are going through, so keep thinking of things to suggest -usually learnt from my mistakes.

Anyway best of luck!

You may also like...

Finally received my diagnosis...

of my uterus it was filled with new blood and lots of it, that I have indeed for endometriosis under

Finally a full diagnosis!

ALLERT I finally have a full diagnosis of Endometriosis, PCOS and adhesions. It had taken me best...

Finally, diagnosis, Endo on both ovaries.

Finally got somewhere although it took almost death!

Finally got my date TLH BSO