Desperately in need of help and advice

[DobbysGammySock]

Hi everyone, I'm new here and am in some desperate need of support and advice.

I was diagnosed with endometriosis in 2014 after a lengthy battle with healthcare professionals, hospital admissions, and incorrect diagnosis'.

Since this time I have trialled different courses of medications, had numerous hospital admissions and have got absolutely nowhere. I feel like the endometriosis attacks are becoming more regular and are now having a significant impact on my quality of life! - i've just registered as a mental health nurse and been in my post for 5 weeks, 2 of these 5 weeks i've been off sick due to my endometriosis.

Since Sunday (time of writing it is Thursday of the following week) i have been in hospital with chronic abdominal pains. Surgeons believed it could either be my endometriosis or appendicitis. They decided to take me for emergency laparoscopy and they found another two patches of endometriosis of which they treated (my appendix was absolutely fine). My bowel was very distended which they said could have something to do with my endometriosis.

The only options i have been given following the surgery are as follows:

To start the Depot injection with the aim to stop my periods (I began this the same day the conversation took place).

To have a follow up appointment with a gynaecologist in three months time - to review how the injection is working for me.

To be seen as an outpatient by the chronic pain management team - currently when i have a flare up i use morphine to control my pain levels, which puts me out of work and out of...well anything to be honest.

Is there anything anyone can suggest for me to improve my current situation. It's taken an emergency admission into hospital and emergency surgery for me to finally (what feels like) prove that i do need help.

[BrightLights88]

Hi,

First of all your not alone. I am sorry your going though all this. I too had severe pelvis pain last yr August and was diagnosed with endometriosis after a transvaginal scan. I have had 9 hospital admissions since september 2018, it got to a point to where the gynae were just controlling my pain with morphine. I didnt want to live life like this.. constant admissions and put on morphine to control pain. I then researched and got myself referred to bsge centre via gp referral. They are endo specialist centre under NHS and since joining them I had a laparoscopy in august, and have not had a flare up since.

Please get your self referred from gp to a bsge centre near to you. you can go online bsge centre and pop your post code to see which one is closer. Good luck stay strong. We can beat this. xx

[DobbysGammySock in reply to BrightLights88]

I will have a look into this, thanks ever so much for responding to my post. It's reassuring that i'm not the only one who has had this struggle.

[BrightLights88]

you can do,because that's what I had done,after gynae overdosed me on morphine and I had a cardiac arrest. After being discharged I went to my gp and got a referral to my chosen bsge centre, not only this I then called my gynae specialist at the hospital and asked to be discharged from their care.

[DobbysGammySock]

I am unsure what you mean by stage? I know in 2014 the endo was found in my pelvic area, and this emergency surgery I have just had was on the left hand side of my abdomen.

I believe i have been seen by an endometriosis specialist - this was when and how i got referred for my first laparoscopy. However, since then no matter how many times i contact the GP and express the pain i am in, i only ever get referred for ultrasound scans, or weeks later i'm told ive been referred to gynae but i end up having smear tests and not having that 1:1 time with a specialist.

i'm at my witts end and am struggling to find the motivation to keep fighting this.

[BrightLights88 in reply to DobbysGammySock]

Endo has stages, I was told by gynae I was stage 3 just mild it's not severe.After referred into bsge specialist centre I was given a MRI scan as gynae specialist only ever performed a transvaginal scan and ultrasound scan, I was told I have stage 4 endometriosis and my bowel is now affected by it. I too have pain only on my left abdomen area and ovary, and left thigh. Gp do not know much one thing sure they send you away for ultra scans.

[tiger-cub]

I have suffered from d age of 15 years .

I would Definitely start the depot progesterone right away to stop your period . Believe me , you will start feeling better in just 7 days . And with he severity of your endo . I would take progesterone only pills/marina coil there after to stop d period . As d more u bleed the more endo forms . And gradually think of hysterectomy. As this is debilitating disease which will gradually take everything from you without you realising it . And bcoz people still don’t know much about it they will not understand what’s going on with you . Hope u get better soon .

[tiger-cub]

Pm me if u need to talk

[DobbysGammySock in reply to tiger-cub]

Do you suffer too? Can't help but to feel alone at times with this.

[BrightLights88]

These are specialist endometriosis centre who carry out excision surgery. These surgeons know what to look out for regards to endo etc.