Does anyone here have dual diagnosis- end... - Endometriosis UK

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Does anyone here have dual diagnosis- endo and adenomyosis?

Natalex profile image
6 Replies

Hi Ladies,

So four months post operative review back end of Novemeber- I was already aware something isn't quite right as the pain I am experiencing due to menstual cycle is getting stronger by the month.

I've had to have another MRI this time with contrast injection which took place on Friday and blood tests as my consultant believe I may have adenmoysis as well. Only other option could be very bad scar tissue, but the symptoms which I am having seem to point to the first option. Myself and my husband want to start a family and have been told that the best thing to do is push this forward- I have had blood tests to check my levels as I am so irregular I don't seem to be ovulating when I should- if at all according to ovulation tests! My cycles are getting closer together 24-25 days which is a major concern to me as I was previously bleeding every two weeks when last not on any form of contraception- 12 years ago.

My cycles are slowing getting heavier and the pain I get before and during my cycle is unbearable at times- contracting too much, bladder and bowel flare ups.I have started getting pains down from my bum to calf as well as a numb sensation at times around the vagina- it's very strange, added on to my usual burning sensation and shooting pains which I get up my vagina and bottom it's really giving me a hard time.

I was wondering if anyone has a dual diagnosis and if my symptoms sounds similar? And how attempts a ttc concieve with similar issues to myself?

Thank you x

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Natalex
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6 Replies
littlebrownbird profile image
littlebrownbird

Hello

I had a dual diagnosis some years ago.

I was ttc and was started on a course of clomid as it was discovered I didn't ovulate every month.

For various reasons I didn't continue the treatment but was assured that there was treatment available to me if I decided at some future point to ttc.

I found using a menstrual cup rather than tampons eased my symptoms considerably and I made some adjustments to my diet to help ease the symptoms. I went to see a private gynaecologist in combination with a nutritionist to help me ease my symptoms but I'm certain that if I'd wanted to ttc, they would have been able to help me do that.

My periods are so much better due to having had a Mirena IUS but as you are ttc, you naturally need a different course of treatment.

What's stopping you talking to your gynaecologist about your symptoms?

Your symptoms sound similar to those I suffered but the private gynaecologist took a holistic approach to my health and the long term benefits have been great. Happy to share the details off line if you message me 😊

Natalex profile image
Natalex in reply to littlebrownbird

I'm guessing this may be the treatment I was told about depending on the results of my recent blood tests and MRI.

I've tried cutting down on problematic foods, in particular to the dates around my cycle. Is there anything in particular you stay clear of?

Yes, we were told if we are hoping to start a family which Lucikly we are at a stage we want to then to push forward now and then look at the options after. I haven't responded well to the pill or implant previously so little unsure or what my options will be.

I told them about all of my symptoms which is why these further investigations are taking place now just wanted to see if my symptoms are similar to people who have been diagnosed. Funny but since this has occurred my mother has noted how similar our symptoms are- she was never formally diagnosed but was told her uterus contracts too much and was advised to have a hysterectomy at 32- my Grandmother also suffered and had one at 38.

That would be brilliant if you don't mind? Thank you 😊

JulieB1971 profile image
JulieB1971

Hi there - I have both too, diagnosed by Lap last August while removing ovaries. I'm 45 and never wanted any children so that was never an issue thankfully. I've had 20 years of being fobbed off by various doctors but now at last I'm now scheduled for a hysterectomy in January and am planning to turn my life around after this and return to running and exercising and generally being back to normal! I wish you every good luck and hope that things improve for you x

Natalex profile image
Natalex in reply to JulieB1971

Thank you! Hoping you finally get some relief, yes people don't realise the effect it has on pretty much everything you do- limitations. Yes it's a relief finally being diagnosed, just the second stage now of finding out what else is going on in there. Wishing you all the best for your operation and recovery! x

littlebrownbird profile image
littlebrownbird

Hello!

I can recommend Dr Yehudi Gordon for the gynaecological bit

dryehudigordon.com

and from a nutritional point of view Dr Marilyn Glenville PhD

marilynglenville.com/womens...

Really helpful in getting my health to a good place.

I hope that helps 😊

littlebrownbird profile image
littlebrownbird

There are chemicals used to bleach the cotton in tampons that can mess with your hormones, which is why in the recommendation of the nutritionist, I switched to pads but the Fleurcup is ace

Their website is fleurcup.com/en but I've just purchased one on Amazon.co.uk

LBB 😊

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