Should I refuse hormone treatment? - Endometriosis UK

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Should I refuse hormone treatment?

Hol_N profile image

Hi there, I'm 19 and am in the midst of getting diagnosed with endometriosis.

Due to pain I am unable to go through with transvaginal ultrasounds or invasive scans, so the next step for me is an MRI with contrast. My Consultant has informed me that regardless of the results of the MRI he would prefer to opt for hormonal treatment, which I have tried previously (with Rigevidon contraceptive pill) to no avail.

I don't like the idea of going through all the suffering I did on the pill again through another round of hormone treatment when it doesn't do anything, and would prefer an invasive/laparoscopic route, but my consultant is reluctant to do so.

Until the results of my MRI come through and I have a follow-up consultation (in 3 months time), I've been told to go back to my GP for contraceptive/hormonal treatment. Any advice on whether it is worth putting myself through all of the mood swings and stress of hormonal treatments?

8 Replies

Hi Hol_N

From my personal experience I would not take the hormone treatment and I wish someone had said to me that I had that option.

I have taken the pill, the mini pill, the deppo injections and had the Minera coil. All of which made me feel worse while I was taking them and then the endo worse when I stopped. It has been six months since I had the coil taken out and I am still struggling with pain some days but others are better.

You can choose what your treatment is so don't feel pressured by the doctors.

Xx

Hol_N profile image
Hol_N in reply to Melon365

Thank you so much! I do feel quite pressured by doctors but it's reassuring to know I have a choice Xx

I had my first laparoscopy at 19. Hormone treatment didn’t help me at all. Ive now had 2 laparoscopies, first in 2017 and the second in 2019! Helps much more, hope this helps x

Hol_N profile image
Hol_N in reply to

Thank you :) X

The mirena coil worked for me😊

I went through the same process during my ‘diagnosis‘ - they were reluctant to even refer me for official diagnosis. As you’ve said, I felt very pressured into the hormonal route. My doctor very much suggested I would end up with hormonal treatment anyway and there was very little point delaying treatment.

I did end up trying Hormonal treatment and I got the Mirena. I have to say, it’s worked amazingly - I very rarely get pain now, and when I do, it’s manageable (I’d equate it to mild period pain level). I haven’t experienced any hormonal side effects (I chose the Mirena as the hormones are localised to the uterus), and certainly if there have been any side effects, these have only been positive.

However, it’s taken me about 4 months to get to this stage; initially the symptoms got worse and I very nearly got it taken out. I would say now however the perseverance was worth it.

I obviously can’t speak for the experience post-Mirena, and everyone is affected by hormones differently - you should definitely do what feels right for you. However, if you do opt for hormonal treatment, my experience with Mirena has overall been positive. Good luck! 😊

Hol_N profile image
Hol_N in reply to Roses21

Thank you so much!

I had my laparoscopy at 19 in December 2018 at the time I was finding it really hard to pee or pass stool during my period week, sharp shooting pains and unable to have sex due to the pain I felt which then progressed to me being diagnosed with vaginismus as well as endeometriosis.

I have been on the pill for 6 year and for the last 2 years I was advised by my gynaecologist to take 6 packs of Rigevidon back to back and then have a week break. For me this has helps a lot as one of my main symptoms is pain when passing stool and urinating during the week of my period.

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