Pain, bloating and fatigue

[HD16]

Hi everyone. I was diagnosed last year with endometriosis and I have cysts on my ovaries. I think it's stated due to perimenopause and the HRT I have been prescribed has helped with the perimenopause symptoms, however the pain, bloating and fatigue of endometriosis are worsening.I have a consultant appointment in 2 weeks to discuss options but I have had additional and excruciating pain today and wanted to ask you all, is that normal?

Everything I read is that endometriosis pain mainly happens before or after a period, not that I have periods how but the last few weeks I've had pain, bloating and fatigue consistent with a period phase. However those symptoms abated 2 days ago and then today I had the worst pain ever in my lower left groin area.

Can pain, bloating and fatigue happen any time?

Much appreciate any wisdom you have, thanks

[Joonaspryte]

yes it can, I am 58 and had a total hysterectomy 16 years ago.

I was also diagnosed with endometriosis following an appendectomy last year. And it has spread in those 16 years.

Obviously i haven’t had periods since my hysterectomy, and my endometriosis seems to have a cycle of its own.

So the answer is definitely it can happen at any time of the month.

[HD16 in reply to Joonaspryte]

Thank you so much for your reply. Well that's definitely what seems to be going on then.

[Tangoandmax]

Hi, part of the reason my diagnosis took so long was that majority of my pain was outside my period. It can happen anytime, pre op I didn’t go a day without pain. Having recorded everything my major flares were just after ovulation. X

[HD16 in reply to Tangoandmax]

Thank you so much for your reply. That's so interesting and something I had wondered. I might try and work out when I ovulate and see if that correlates.What op did you have? If you don't mind me asking?

[Tangoandmax in reply to HD16]

It took me eight years to get diagnosis confirmed and get treatment. During my last referral I took a diary of everything - it’s hard for them to dispute when you’ve recorded everything. And a great way to spot patterns.

I’m six weeks post first excision. I had endo removed from pelvic walls, ligaments and had my ovary/uterus detached from one another. Still struggling with pain, but trying to be patient as it can take quite a while to see improvement (so I’m told/desperately hope) xx

[HD16 in reply to Tangoandmax]

Thank you so much for the advice. I hope you see improvements very soon.It's quite incapacitating isn't it?

[Tangoandmax in reply to HD16]

No worries, very incapacitating! Depressing too. I’m having a fairly bad/sad day today. I pinned so much hope on surgery working and when family and friends continue to ask are you all fixed now, when there is no fix. Whilst I’m struggling with random bouts of pain more severe than before surgery, it’s getting me down. Might be the lack of sleep though, was awake 3-5am debating an A&E visit x

[HD16 in reply to Tangoandmax]

Well thank you for reaching out. I'm sad to hear how difficult it's been for you. I'm already realising that people expect it to improve, I have pointed out it's at least cyclical!

What pain relief are you on? You can always ask your GP for a review or pain team referral to the hospital.

[Tangoandmax in reply to HD16]

I have a long-standing cocodamol prescription which has never been reviewed (literally five years I’ve had that) that and ibuprofen at the moment. I’ve never seen a pain team either, think that might be next step for me.

[HD16 in reply to Tangoandmax]

Definitely time for a medication review. I recommend that to my patients all the time.

[Tangoandmax in reply to HD16]

Thank you, will request with my GP xx

[Joonaspryte in reply to Tangoandmax]

Yes, that’s a good idea Tangoandmax.

I’ve started recording all my symptoms etc, dates etc I take photos of all the blood loss from the bowels, and showed them to all doctors and consultants etc, I’m so glad I did because they were so shocked and really made them sit up and take notice.

I think we should all do diaries.