22, 2 laparoscopys & still bleeding?!

[Acjacobs]

Since the age of 14/15 I have suffered with bad periods - heavy bleeding and excruciating pain. So many doctors visit's and paediatric doctors appointments. I was told at first 'the pain is in your head darling' until we mentioned my Aunty suffers from severe Endo. Quickly was referred to the Gynae, had a laparoscopy and was put quickly on HRT after (I'm only 16 at this point) for a while it was fine and the bleeding was no existant. But during intercourse I would get pain and slight bleeding. Slowly it started creeping back, but I found Utovalon - this was my saviour, 3 tablets a day and would stop the bleeding. 

Few years later, in a serious relationship, I needed contraception. I have tried the pill - however I got pregnant and suffered a miss carriage. The bleeding was constant and pain horrendous. I went back to see my Gynae, and he gave me a second laparoscopy - said it was all fine but a bit clogged up. Followed by another 6months of HRT. By this time I am on the implant, so many hormones in my body! 

Over a year later, I am still on the implant and now resorted back to taking Utovalon. If I miss one tablet a day - I bleed, not just spotting full on. I have been advised by another Gynae to either come off the implant (no contraception and not ready to have kids yet) or stop taking the Utovalon (then I will constantly bleed) as I have to many hormones in my body. Neither is a realistic option, I know that if I don't take the Utovalon, I will constinuously bleed. Its a constant struggle, and have been through a lot. From my op, it doesn't sound like the Endo was that bad... Then what else could it be? I know my body and have tried so many different routines with the tablets and they haven't worked. 

I'm 22, with Endo and an under active thyroid - I feel tired and could sleep anywhere. Putting on weight is crazy easy, loosing it seems like a mission, I'm overweight. I don't seem to get pain, only now and again but the more I bleed the more I expect it - that's one positive I guess. Silly things, I can't wear white knickers as I know they will get ruined, or conscious what clothes I wear. Have to really watch what I eat, taking 4 tablets every night.

Not sure on where to go next... Not a routine I want to live forever! Any advise would be great from Women who have more experience in this horrible disease?!  

[JeanOsborne]

Hi, are you being seen at a BSGE centre? 

[Acjacobs in reply to JeanOsborne]

I'm not no.. Can I be referred by my GP? 

[JeanOsborne in reply to Acjacobs]

Hi yeah . Have a look on the BSGE website for a centre near you. Then armed with this info ask GP for referral. 

I know what it's like to constantly bleed, how tired you get , how horrible it makes you feel. 

I was lucky in some respects as when I had my diagnostic lap they discovered a tear in my vagina , caused by having a smear test. Once it was sewn up the bleeding stopped. But there are many reasons for continued bleeding and maybe you would benefit from seein a specialist.

For your gynaecologist to recommend a hysterectomy at your age  is not right and for that reason alone I would seek a second opinion.good luck and keep us updated.

[Acjacobs in reply to JeanOsborne]

Thanks so much Jean, I am going to look into it and get a GP appointment. Glad to hear your bleeding has stopped, fingers crossed this is the end of the cycle for you! X

[JeanOsborne in reply to Acjacobs]

Yeah it definitely is now. I had hysterectomy (due to adenomyosis) BSO and excision beginning of March. So I know that won't be happening again.