to whinge about endometriosis?

[spikeandbuffy24]

I'm so fed up today
I changed doctors and finally got a gynae referral and an ultrasound scan. Mentioned to my old doctors I thought I had endometriosis and they said if I didn't want the pill they couldn't do anything

Had an ultrasound which found endo, then took 6 months to see gynae. He said it needs a multi disciplinary team meeting, MRI, medical menopause then surgery

Had my MRI 8 weeks ago and got an appointment through today for the next consult. In 2025. Then they've still got the MDT meeting, menopause etc before surgery

In pain every day at the minute and spend most nights wondering if I've got appendicitis or it's just fucking endo. Sickness at work is awful as on day 1-3 of my period I'm just on all fours crying or screaming in pain. There's no other pain relief available as I've maxed the lot out

I just don't understand why it's 2025 for an appointment to discuss the MRI results and why it can't be a telephone one. I know it's endo, and I know it's stage 4!

You have my sympathy OP

I have the coil to manage symptoms and am currently waiting for a laparoscopy.

I'll be in menopause before they get to the lap surgery at this rate

He doesn't want to do an exploratory one hence the MRI, just do it and excise everything

I sympathise massively OP. I went through very similar back in 2020, MDT referral, MRIs and ultrasounds. Diagnosed with stage 4 endometriosis, large cyst and frozen pelvis. I needed a full hysterectomy but had to wait 3 years for it. I was on so much medication by the time it actually went ahead but was still in immense pain.
Amitriptyline was what really helped me, have you tried that?
It's horrendous that we have to put up with it and fight to stand up for ourselves to get treatment.
I ended up under a fantastic gynaecology team, if you are in East Anglia I would highly recommend the team I saw.

@QueenietheCutie I've actually started on it about 2 weeks ago to try and help the bladder symptoms
The worst bit is right hand side, just inside my hip bone almost. It's such a nagging griping pain and it's all month

Has anyone mentioned trying decapeptyl until your appointment? Puts you into a chemical menopause and works really well for a lot of women.

I can't speak to anyone. This 2025 appointment is literally for MRI results and to discuss next steps (which we already discussed!)
He said I need medical menopause for 3 months prior to surgery and can't have HRT alongside it as it would defeat the purpose of shrinking the endo
It's a well regarded specialist centre but they're just so so busy

I'm actually petrified of the medical menopause as I'm on other meds that give me flu symptoms every 2 weeks and I'm allergic to heat which will be great with hot flushes

I rang this morning and they've offered an appointment for the first week of November so that's better

I'm back
Consultant is off sick until the end of the year

I have my MRI results by email

Findings:
The anteverted uterus demonstrates changes consistent with diffuse adenomyosis.
There are endometriotic cysts in both ovaries, 8.2 cm on the right and 3.3 cm on the left.
The ovaries are
in a kissing position, is here and to each other and to a dense desmoplastic change on the posterior serosal surface of the uterus.
There is also some focal fibrous adhesion to the anterior surface of the upper rectum

Conclusion:
viscera appear clear.
Deep infiltrating pelvic endometriosis, with prominent bilateral ovarian endometriomas.

Did you get anywhere with the department OP?
I have very similar endometriosis and adenomyosis. The waiting lists are getting ridiculously long in gynae and in the meantime we are just left to get on with it.

Yes! After the MDT meeting they moved my appointment so I'm seeing the consultant to consent for surgery next Friday

Good luck. Hope it goes well.