Thoracic Endometriosis and Peri-menopause

[Chez99]

Does anyone have TES and in peri-menopause or in menopause?

When I was diagnosed in 2009, I was told TES was very rare and that my combined surgeries and treatments were still experimental. Fortunately they were successful and I've been symptoms free for 15 years.

TES seems to be being diagnosed a lot more these days but it seems at 48 and perimenopausal I find myself in uncharted waters again and different doctors having different views on where we go from here.

My surgeon told me to stay on the depo until 52, and we would review my forward health from there. He has since retired, the GP who travelled the journey with me has too retired and so I am left with a bunch of new young GPs who all want to put a stamp on my treatment. They don't know who to consult be it respiratory or gynae. The main opinion however is I've been on the Depo too long and it must stop.

But what then? I have dabbled with HRT and it immediately gave me the start of my old endo symptoms, so I know my endo is dormant because of the Depo not magically better or over with.

I guess what I'm asking is- is anyone with my condition past this point and what was your journey or am truly the experiment again?

I'm less worried about my lung collapsing (i know the symptoms and once in, a chest drain isn't too bad!) and more concerned of the 3 week heavy bleeds and debilitating pain i used to have. I can't afford the weeks I used to have off school/college in my current work life.

Can I force them to keep me on the Depo longer or will I just have to allow them to play roulette with the "suck it and see" approach they are currently suggesting?

[RosieFalkor]

Hi,

I don’t know the answer sorry. I have diaphragmatic Endo but was only diagnosed 18 months ago and haven’t been on any hormone treatment.

However there is a really good FB group called Thoracic Endometriosis/LUNG Endo Group which is really helpful. I recommend joining there if you’re not already part of it. There are expert doctors in the group and lots of experienced people. 😊

Hope you get some help soon

[Chez99 in reply to RosieFalkor]

Thanks. I joined that group before coming here funnily enough but had no replies to my posted questions so I looked elsewhere and came across this group.

[JOSANDY40]

Hi, I experienced Endo in my Lungs in my 30's. Lungs bleeding each mth the mths off drugs. I have Endo in my trunk with organs distorted.I stayed on drugs almost my whole life except when doing IVF which failed at 39yrs, making me ill.

Sometimes fluid on the lungs which partner would bang my back.

I have scars on lungs. I stayed on Zoladex til past menopause in 50's.

I have developed lung issues since Asthma in my 50's and a cough with chest/back pain. Because of ridged bowel I have Colitis and Diverticulitis. My Pancreas was damaged in my 30's by longterm use of Danol a steriod. After several attacks I lost some enzymes and developed high blood pressure which hasn't got any worse. I tried addback during menopause but that made me ill with Endo pain through the roof.

I don't feel there's easy answer for the menopause. I stayed on the Zoladex as I couldn't cope without it. The specialists wanted me off it. Certainly I was experiencing new symptoms when flying of dizziness and though unproven it was thought I had a inflammation effect in my head by the yrs of being on Zoladex effects on the Pituary, gland hormones. Zoladex was a wonderful drug the years I took it. Hard to get on and hard to give up. The HSA finally refused to pay for Zoladex. I went through a very difficult time through coming off Zoladex with a nasty menopause which made me a bit werid, low, exhausted, terrible brain fog, dizzy, suffercating sort of vacuum feeling, hard to find words. The Endo pain returned this period of 3yrs so I ended up on Morphine and various painkillers couldn't function daily tasks. A depression followed, my husband left, a divorce, then diagnosed with PTSD. I still have PTSD but I am coming out of it on a lower dose now but not expecting to ever completely come off Venlafaxine.

I still have Endo. Its not as bad but last year had 2 operations, more cysts. My bowel, colitis etc is a issue which probably needs more surgery but there are concerns if I should or shouldn't as risks of nerve, organ damage to bladder or bowel with previous Ops/ bedded down and distortion. I am waiting on MRI.

[Chez99 in reply to JOSANDY40]

Gosh what a journey you've been on. Thank you so much for sharing it with. What you've experienced is mostly what I fear but I really appreciate you telling me your story to know I'm not catastrophic and my concerns are valid. I've read countless times endo doesn't always stop after menopause so longer term treatment needs to be considered.

Thank you again. X