Further down the line: Apologies for long... - Endometriosis UK

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Further down the line

Sterou profile image
5 Replies

Apologies for long story ......I was diagnosed with severe endo back in Dec 2005 ( age 30) when I thought I had bad IBS ( I had stopped my contraceptive pill for a break?!? Wish I never had!!!!). I had an immediate lap where they removed a 9cm cyst on my left ovary and another cheeky one of 3.5cm that was squashing my felopien tube..i had the dye, all was ok; the op was successful and all the chocolate stuff removed. I was asked to get pregnant and I was lucky to conceive naturally very quickly. The pregnancy suppressed the endo and a year after I was still ok with only a small 3cm cyst back , this is when I decided to have another child and this again suppressed the symptoms. A few months after the second pregnancy I decided to have a morena coil fitted as I was told that this was the best option for endo ladies. Yet again whilst often unpleasant ( a few nasty symptoms under the coil) this did the job for 4 years until it stopped working and after daily bleeding and painful sex - I had it taken out. I then was offered to take the micronor "back to back" pill to continue suppressing the symptoms.. It started well but after 5 months under this pill, I have had all the side effects ( mild headache, weight gain, mild depression, sore breasts, IBS etc) and now wondering whether either endo is showing it's ugly head again or the pill is not suitable for endo ladies.

My questions therefore are :

Could I stop all form of chemical contraception and see if endo comes back?

Should I go back on morena coil?

Is there another option?

Am reading some raving reviews about special diets?? Is it true and how hard is it?

Am in no endo pain at the moment and have not been really for 10 years ( I used to roll around on the floor ..)

I am yet again at a crossroad and would love to hear from those past pregnancy issues and into long term minimising symptoms. Please help!!

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Sterou
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5 Replies
dk1136 profile image
dk1136

hi sterou, make an app with your dr and ask them what would be best for you, after i had my son 5 years ago thats when my pains started, i was on the mini pill, but kept being admitted to hospital with servere pelvic pain, everytime this happened they found a cyst on the ovary, they waited till it ruptured and discharged me , they were 3.5cm and said too small to take off, i was in absolute agony, while i was in hospitaln i looked at the side effects of the pill and sure enough cysts on ovaries was one of them, i stopped the pill immediatley and started on the depo injection, i still experienced pain but unbeknown to me then i had endo, i started on the hormone injections had 7 months of being pain free - brilliant it was, now im waiting on a hysterectomy.

im glad to hear your pain free at the min, its nice to hear someone is :)

sending hugs

x

Sterou profile image
Sterou in reply to dk1136

Thanks for sharing your story, I will look into the injection .. And though I defo don't want any more kids, (2nd pregnancy was twins:-) ), I am a little scared about being so bold as having an hysterectomy.. Tell me more!!!

Tboag profile image
Tboag in reply to Sterou

Hi, I'm awaiting a hysterectomy, but u have ADENOMYOSIS and it's the only cure ive had 3 sons and don't want anymore, so this is my only option,

Whilst the pills and injections can suppress the rndo and its symptoms it dosnt in the long run help, your best bet would be to get a referral to a ENdo specialist ( look at lindles posts about how to find one) and they will give you a laparoscopy and excise any Endo found, hopefully this will stop your many symptoms, and although not a cure as such, as ENdo can come back, it's your best bet, a hysterectomy isn't a sure way of helping endo, as the body still produces estogen and also if endi is left behind it is self feeding so will grow any way

Try for a refferal,

Good luck xxx

Tboag profile image
Tboag in reply to Tboag

Sorry that's meant to say I have denomyosis not U

Xx

dk1136 profile image
dk1136 in reply to Sterou

Basically with the hormone injection which put me in a false menapause working the consultant said what should we do? I said if they worked then obviously if I had a hysterectomy I won't be in any pain. She explained I was young etc but I've got 2 kids would rather sacrifice having another child for being pain free, x feel free to message me anytime x

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