Coming off hormonal contraception - Endometriosis UK

Endometriosis UK

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Coming off hormonal contraception

RhiannonT profile image
5 Replies

So I got in touch with the hospital today, apparently my records (Laparoscopy report and photos from my Laparoscopy) should be with me within the next couple of days. I also spoke to the GP on Monday (not my usual GP) and she said the private gynae wrote to them explaining everything and next steps. She agrees with him completely that there's something wrong. I've been advised to come off the Depo and all hormonal treatments to see how my periods/cycle is. I've then to keep a symptom diary for the next 8 weeks and go back to GP, she'll then try and refer me to a specialist for a second opinion. My question is, has anybody been on the Depo Injection for years then came off? If so what was your experience? (I had a Laparoscopy 22nd March, no endo found. Strong diagnosis of endo, my lap wasn't performed by a specialist and the general gynae didn't even have a special interest in it, I went to see a private gynae who is an endo specialist on NHS too. He says all symptoms clinically point to endo, and that it's highly possible it's been missed due to a non specialist carrying out the operation. I've to come off all hormonal treatment, keep a symptom diary for 8 weeks then go back to GP and try and get referral to specialist centre). Sorry for long winded post. I have a lot going on. Does anyone have experience coming off depo, if so what was it like? I'm dreading the next 8 weeks. 😔 I've always been on contraception to try and help with the awful symptoms of endo. X

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RhiannonT
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kate24601 profile image
kate24601

I wasn't on Depo but was in a similar position to you. Had a negative lap after 4 years of being on various pills, so decided to just come off it all completely and honestly found daily symptoms to be much more handleable. The pill gave me awful daily headaches and mood swings and it's now been about a year and it's nice to see my hormones finally settled into a natural routine. It also sounds horrible but I'm hoping that being off it might make any endo that me and the gynaeo were sure was there grow back, so that if I go to have another lap or scans in future then there will be something there, as I think it was ridiculous they agreed to my lap after 4 years of treating it! x

HarrietC profile image
HarrietC

Hi Rhiannon,

I was on the pill for about ten years, I was initially put on it for my painful periods and then my GP was convinced that the pill was doing more damage than good. So I stopped the pill and went natural with them and it initially got worse but over time it definitely got better, although my endo did progress with my ovaries naturally active. It wasn't awful though so don't dread it, I think over thinking can be the worst part of it x

RhiannonT profile image
RhiannonT in reply to HarrietC

I'm only 10 days in and I keep getting the most horrendous stomach cramps/period like pains. I've got bowel problems atm too which can't be helping but I'm in agony. 😭😭 Is this normal when coming off birth control when you've not had a period for years? Thanks.

X

HarrietC profile image
HarrietC in reply to RhiannonT

Hi Rhiannon, I'm afraid it will be agony the first few times x

RhiannonT profile image
RhiannonT in reply to HarrietC

Oh the joys lol!! ☹️ X

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