What to do next?

[Cherrycat32]

Hi, I posted last year so thought I'd do an update. Long story short I'm 51 and last year i had scans to discover I had an endometrial cyst and fibroid. I had been on hrt for just over a year.

Previously to this I have always had ibs type symptoms and some heavy bleeding but not too much pain but was on some form of contraception such as mirena.

Since discovery of chocolate cyst no medical person has mentioned endometriosis to me but through my own research I believe this is something I have.

Since last year I stopped hrt once cyst was discovered. In my follow up scan they said cyst was gone and that was the end of that.

I have had bowel problems with constipation that I have been to the Dr about for about 3 years and only get sachets which don't help. I have digestive issues, really bad boating and now I'm bleeding for a week then spotting for 2 weeks after. Also feel really ill for few days at beginning like I have flu.

I've been back to the Dr who has done bloods ,urine and stool test. All clear.She is saying symptoms could just be part of menopause. Also saw womens health nurse who did a physical exam, nothing unusual. I discussed possibly having endometriosis and was told that because of my age the gynecologist would not be interested in seeing me.

She referred me for an ultrasound and said if that came back clear we could then consider mirena coil with estrogel which I could have a low dose.

With how I've felt in past few years, no energy, weight gain and above symptoms I'm worried about making things any worse. By trying hrt.

Any thoughts.

Thanks

[Funpizza42]

I’m sorry to hear that you have not got very far with the NHS, I was under the impression any bleeding after the menopause needs to be investigated to eliminate the risk of uterine cancer, I would push your GP for an gynaecology referral (maybe even go armed with the NICE guidelines for heavy menstrual bleeding which highlight as much) and if you get nowhere consider getting a private consultation with a gynaecologist, I think the cost for the consult is likely to be around £200 but may help overcome some of your concerns regarding your symptoms?

[Cherrycat32 in reply to Funpizza42]

Thanks for your reply, as I've not gone 12 months without bleeding I'm still in perimenapause which is what they're putting my symptoms down to. I will keep pushing for a referral. Thank you.

[1Poppy1234]

I'm now 52 I had a full hysterectomy and oophectomy to remove everything they found fibroid and my bladder adherred to uterus pouch of Douglas obliterated by scarring etc etc age doesn't come into it when your in pain I had no menopause symptoms really so how long do you wait?? I refuse hrt as I have researched it and it seems to bring the endo adeno back. Push like heck for care and don't take no for an answer!! Good luck.

[Cherrycat32 in reply to 1Poppy1234]

Thanks for your reply, and yes I agree age shouldn't come into it I feel I have a battle on my hands be nice to gave some energy for it 😊

[Dogmad6]

I think you've been given incorrect information. I am 67, had a radical hysterectomy and oophorectomy 21 years ago and excision surgery of numerous places numerous times. I still suffer with endometriosis. It very much can persist after menopause or hysterectomy. One of the worst symptoms for me has always been the bowel involvement.

I follow the low fodmap diet as advised by my private consultant and that has helped a lot. I highly recommend but it isn't easy. However, I still suffer with random bouts of agonising pains, even being woken from sleep. I live with things as best I can.

I think you should try to find a sympathetic GP and also a good private endometriosis specialist if finances permit.

I hope you can get the help you need.

Good luck xx

[Cherrycat32 in reply to Dogmad6]

Thank you for your reply and yes like you I know endo can persist after menopause, unfortunately it seems that most the medical professionals don't seem to believe this. Unfortunately not in a position to go private at the moment but will have the ultrasound then I think will push for a gynecologist referral but I think I might be in for a long wait.

I have looked at diet and tried gluten free. I have cut down on sugar and cut out alcohol. But I will also look at the low fodmap diet . Thank you.

[Dogmad6]

ps I have never had HRT, wouldn't touch it.

[BeautifulTree]

I'm sorry to hear how badly you have been, treated. You have my full sympathy and empathy as similar has happened to me. I'm also 51, over the last 2 years I started having extremely heavy periods, back pain, flu like symptoms, extreme pain in my right side and physical exhaustion. At my initial appointment with GP she said probably menopause symptoms. I went back 3 times and it was only when I said I had spotting between periods that GP referred me to Gynaecologist and ultrasound. Scan showed a chocolate cyst, adenomyosis, a polyp in my uterus. Gynae said definitely stage 4 endometriosis. Had a MRI and then he said i have no endometriosis at all!! Very strange to go from stage 4 diagnosis to nothing. All he did was remove the polyp by hysteroscopy, did a biopsy, and said that would cure my heavy bleeds. He dismissed me when I said what about the cyst...I got the impression the Gynae really doesnt want to deal with women in menopause with endo. So I'm still without treatment. I don't take hrt. However I am using the excellent 'Heal Endo' book by Katie Edmonds, I take supplements prescribed by a naturopath, I do regular physio and exercise...all this has helped, although i still get flare ups. I think we do need to push for NHS treatment as well as try to do alternatives to NHS. Especially if endo symptoms continue after menopause they should not exclude 50+ from treatment. Just wanted to assure you are not alone in your experience! Interested to hear from others with endo in menopause.

[Cherrycat32 in reply to BeautifulTree]

Thanks for your reply. Sorry to hear what you've been through, its so confusing when each person you see says different things and makes me mad we have to push so hard to be heard. I've been referred for ultrasound so I'm going to see if that shows anything.

I am at the moment in two minds about trying the mirena coil .I have had it in the past without issues but preferably wanted to continue without hormones as really worried about making things worse as don't think I could handle it.