endometriosis over 50
Hi, I am new to this forum. My Dr and I believe I am displaying signs of endo at age 52. Looking back, I guess I may have had obscure signs years ago but nothing concrete. I still have a period every month and not heavy by any means and no more frequent than once a month. For me it is the pain associated with my period (nausea, cramping that is unbearable and I have to rely on naproxen every 4 hours just to keep it in the background, painful bowel movements and pain radiating from my lower back and abdomen up to my mid back).
Have been referred to a gynecologist and am awaiting that referral.
Spoke with a pharmacist and she suggested that oral contraceptives won't do much since there is no heavy flow.
Anyone else over 50 going through this?
Thanks ... Suffering in silence
I'm not 50 yet; I turn 40 next month. But endo is definitely a possibility at any age, even after menopause. I'm really glad to hear you're going to see someone. Your symptoms sound a lot like mine. And mine have only gotten worse with age, though they've been bad my whole life. Hormonal medication wasn't helpful for me, but it's really hard to say who'll they'll work best for. I think hormonal treatment is worth discussing with your doctor. But keep in mind that the only way to diagnose endometriosis is through a laparoscopy, so if you get to that stage, you'll need to see an OB-GYN. But not all OB-GYNs are specialized or knowledgeable about endo. The one I saw a few years ago refused to search for endo or scar tissue. But my endometriosis specialist did, and I had excision surgery this past March to remove both. One place I suggest searching for a specialist -- if you aren't satisfied with your doctor -- is www.icarebetter.com. I trust it because my surgeon is on there, as are many other vetted endo specialists. Wishing you well! - Keri (team member)
Hi there , yes I’m 54 and have been knowingly suffering from Endo since I was 40 . Diagnosis came about due to the removal of a chocolate cist on my ovary pressing on my bladder but I think I had been suffering in silence for a very long time thinking I was normal as nobody took me seriously. I Had no further help with and little explanation of what endo was after this . I’d never heard of it before and no one around me had heard of it . I went on to suffer several lungs collapsed so call spontaneously pneumothorax which are now thought to be Catamenial pneumothorax .. my liver herniated through my diaphragm and my lungs also collapsed from the top . I now have it in my bowel and all of my reproductive organs plus very large fibroids.. I bleed heavily most of the time dispute taking the pill . I surprisingly haven’t reached menopause yet .. my mums menopause was in her 40s ..
I’m trying to work out what to do next ..
does anyone have any advice?
I’m told that if I have partial hysterectomy and endo removed from my bowl I could end up with a stoma bag .. if I don’t have these things and wait for the menopause to begin the endo and fibroids may shrink ?
I find it hard to explain, think I’ve rather simplified it .. ?
I’m concerned as you say KeriWiginton that it can even be a problem after menopause??
I feel I need specialist advice to help me decide what to do next ? Everybody just keep telling me it’s my choice but I don’t entirely understand all the facts ..
the male gynaecologists I’ve seen seem to air on the hysterectomy and stoma side of things and the women gynaecologist the leaving it side of things .. ? These have all been rather quick discussions and it’s a lot to get you head around ? I need a thorough conversation with an expert …
Any help hugely appreciatedYou are definitely not alone! xx Sorry I should explain , Re - my previous message above .
catamenial pneumothorax is when endometriosis lands on the lung and weakens it causing it to collapse.
Also
the male gynaecologists I’ve seen seem to air on the hysterectomy and stoma side of things and the women gynaecologists I’ve seen lean on the side of leaving it to let the menopause help it stop naturally?
( but I’m guessing the menopause will last at least 5 years ? I just don’t know…. ?It sounds like you definitely need to talk to a specialist who can explain exactly what's going on, including all of your options — that might be surgery or a symptom-management plan. Don't be shy about asking for a visit JUST to talk about what's going on. If your doctor rushes you, seek someone else. There are specialists out there who operate on lung, bowel, and other extra-pelvic endo. I would seek out one in your area or even set up a virtual visit with a specialty center that may be elsewhere. Some do consultations even if they don't operate on you. And they should be able to review your records. A site with vetted endo doctors is at www.icarebetter.com.
A hysterectomy is not a cure for endometriosis, and might not help with endo issues outside of the uterus. Though, it can help people who have serious period pain or adenomyosis. The procedure affects everyone differently, and I can't give you medical advice. But one of my recent OB-GYNs suggested I get a hysterectomy when I complained of diaphragmatic cramping and pain with sex. I chose to get another opinion from a surgeon who specializes in endometriosis only. He was able to perform a surgery to remove the issues that were causing me the most problems. I hope this helps! - Keri (endometriosis.net team member)
Thank you Keri for the information and thank you Molly for sharing your story and your support. Molly you definitely need to see a specialist. I'm awaiting my specialist appt and doing research in the meantime on my options. Sorry I have no advice to give as this is new to me. Thanks for the support!
