Thinking about stopping hormone therapy but concerned doctors will react badly.

[kailee49]

Hi everyone.

I’m 21 and have had chronic pelvic pain since I started my periods a week after my 10th birthday. Prior to that I have always have recurrent UTI’s. After years of waiting, numerous referrals and told it was normal I was finally told I most likely have endometriosis about 4 years ago but still have not received my diagnostic laparoscopy (pandemic).

A year and a half ago I was put into artificial menopause and suffered severe side effects in terms of my mental health. I had really extreme mania as well as all the other awful symptoms of menopause and almost tried to commit suicide it was so bad. Obviously I then stopped the treatment and my mental health improved but my pelvic pain was untouched by the entire experience.

I had the mirena coil at age 18 which stopped my periods altogether but would occasionally pass clots of varying colours. The only hormone treatment that’s ever worked even slightly for me is the combined pill but I had to stop taking that after being diagnosed with factor V Leiden.

Post menopause, in April of this year I had a cyst rupture on my right ovary and was hospitalised for a week with a pelvic infection afterwards but luckily didn’t require surgery. My CT scan or ultrasound could not get a clear ‘normal’ image of my left ovary, something doctors were concerned about but didn’t think it warranted any further tests as it could have been down the fluid in the pelvis.

Whilst waiting for my laparoscopy, my doctor has put me on Norgeston, the mini pill, taken in conjunction with having the mirena coil. It’s been a month and I’m going insane, I’m hormonal, I’m hungry and I’m severely depressed with no motivation. It’s ruining my life and my university work is affected and my new job, this is without all of the pain which never goes away.

I have been thinking over the last week of stopping all hormone treatment completely but I don’t know whether the pros outweigh the cons in this case. I haven’t had a natural cycle since I was 13 and am unaware if I would even have a period at all. But also knowing how life altering my periods can be that how will I manage day to day life.

I’m just wondering if anyone has any experience in making a decision like this at this stage and how perhaps I should go about discussing it with my doctors as I don’t want it to seem like I’m declining treatment but I really just don’t think it’s good for me.

[Jade2000]

hey,it’s your body and do not be ashamed to tell the doctors how you feel about the current treatment plan. You know your body more than anyone does, I have not been through the same experience as you however if I knew it was affecting my life style I would definitely mention something. I am currently on the depo injection for my treatment and it’s not for me at all, luckily I am awaiting for my surgery in a few weeks so I don’t need to tell my doctors. But honestly hun I would mention something and see if there’s any other options. Sending my love and I hope you sort something soon x

[Bethleah]

Yes. I have tried various pills, mini pill, zolodex with hrt and the side effects were horrendous. I told the consultant recently I won’t take any more hormone therapy unless I’m at risk of losing my left kidney (Endo in left ureter caused loss of kidney function). He’s accepted this. But I’ve also been under the pelvic pain clinic who have told me to do it as it’s my body and hormones don’t suit everyone . They take a more holistic view. I see them for pelvic physio which helps. It depends on your symptoms. Mine were made even worse than by taking hormones. The pain is manageable mostly with paracetamol and ibuprofen when needed. It’s all the other stuff that’s so debilitating.

I use a bio identical progesterone only cream (not told nhs this as they don’t like it over here). It costs but does help. Sone supplements hep too.

I was supposed to have more surgery in December 2016 but was cancelled a week before as it’s too complicated, I’m one of the most complex cases they have ever seen at Oxford John Radcliffe and it was too risky. 🤦‍♀️ No surprise for me xx

[Afrohair]

Not read all your post as on my way out so apologies in advance but read the title don't be concerned how doctors react this is your body!i gave up hormone therapy last year best thing I did it's your body you live everyday with it

[Thecrazypugglelady]

Im on zoladex and i hate it! Been on them almost a year now! My gps where very supportive of the fact I didn't want anymore injections I find the problem is that the gyni consultants who don't know what else to give. So i said ive tried everything you said enough is enough they don't work they affect mood and make my belly look as though its about 4 months pregnant which is adding more pressure!Again all scans are clear as of late but endometriosis doesn't show on ultrasound MRIs are much more detailed i also mentioned this and that basically im being fobbed off and done with not having a life i know have a date for surgery. Given that you are so young I don't blame you not wanting them Id be honest explain you ve tried them they don't suit you what are the other options. Im sure that they may be able to find a different treatment that helps there are loads of different contriception and they may be able to help with the suicidal thoughts too. I experienced them for the first time on these injections and they put me on amitriptyline which helps with pain too there maybe something that they can offer yourself. You could ask to go under a pain management team they are amazing and really listen. Remember that you are the patient and its your body! I always ask for someone more senior who understands endometriosis if i don't get the help i need. The first time you do its scary but then after that they know im not allowing to be fobbed off 😄 I find it really helpful to write down what your plan is and also any questions you have because when you go in i often get angry or feel intimidated and forget what i want to say 🤣with regards to uni is there anyone you can go to for support? Or do they or work know what your going through? If you feel that you can confide in them it may be a good idea to explain and see if there are any options they can do to help honestly though ive been through everything youve been through and looking back now the best thing i did was stand up for myself you know your own body 🤗 good luck xx

[endopositive]

Try zalkya, funny I tried all those hormone treatments different pills nearly died/ wanted too. A simple pill made for endo is all we needed now available here since Feb xx pls try it it will change your world, I take it daily no break but it saved me having hysterectomy. I had the best gynae who helped me understand the drugs x good luck xx