I need help...

[Amycartz]

Hi.

I'm 26, I have been on and off contraception pills/injection/Implant for 11 years. In the beginning it was for contraception but as the years have gone on it was required due to extremely heavy periods (hospitalised twice for anemia) bad acne, severe bloating (to a point I gained severe stretch marks over night!) hair growth, all of the horrific symptoms of a my cycle. I was seeing my GP for 18 months straight before he referred me to a gynecologist and diagnosing me with PCOS. I started suffering from migraines and he told me that I could no longer carry on taking the pill (I have taken everyone available) due to me being a smoker, a little over weight and now a migraine sufferer I was at high risk of having a stoke. I first saw the gyne in June 2017. He told me to stop taking all hormone based tablets and use condoms for protection. I have to say I have never felt more of a human, more of a woman, more normal than I can remember. I actually feel, I don't feel numb all of the time. I actually enjoy having sex with my partner of 6 years (after 4 miserable years on my part) I am having a period once a month rather than 6+ months at a time. My vagina is no longer dry, I do not constantly suffer from Thrush. I know after all of this, people can say she's cured! Not the case. 3 days before my period starts I become a monster. I am unrecognisable. I shout and scream at anyone who is in front of me. I cannot drive as I get extremely bad road rage. I cry, I hit out (literally), I am a monster. I also still suffer with heavy bleeding and can feel the blood pouring out of me like a tap. I have clots every day/night. I bloat, I am doubled over in pain. I can't move without feeling like someone has stabbed me with a machete. The up side to all of this, I only deal with this for 1 week a month and then I am back to 'normal'. Before hand I was struggling everyday. I went to see my gyne today and told him of all of this and I told him that I gave up smoking and lost a little bit of weight. I asked him how I can stop suffering with the physical side of my period and his response was - Combined contraceptive pill. The treatment I have had for 11 years that has never worked he said this was the only option. I asked him about my severe mood swings and told him I actually got physical with my other half and he had to move out for 2 days because he mentally could not cope with my temper (ONLY WHILST ON MY PERIOD) his answer - Anti depressants! What the? I have to admit, I flipped. He was writing a prescription for anti depressants with out asking me any further in depth questions about me. About my mental health, my previous mental health. He didn't even tell me they were anti depressants, I asked him if they were and he said yes. After he calmed me down, he told me about the Mirena and said to research it as it could be an option. After researching - I can see that the side effects are the same as some of the oral pills I had taken in the past 11 years which didn't work. How can he be sure that this will work?? I really do not want to risk going back to the shell of a human I have been. On the other hand i want to marry my fiance as planned next month! I am stuck - I don't know what to do. I asked about a Hysterectomy - he said he hasn't recommended this as he doesn't see it as an option for me and he doesn't make the decision - it has to be agreed with a 'panel' of consultants. A panel? What is this? - X Factor!? He also said that there is a possibility of me having endometriosis. Just out of the blue, this has not been discussed before – only PCOS. (A bit of history that I should of mentioned) I have had blood tests 4 times on the first 1-2 days of my period which have confirmed that my testosterone is higher than it should be. I do not have diabetes. My Iron is low sometimes so I take supplements. I have also had 3 pelvic scans which show that I have cysts on my ovaries although, apparently not big enough to be causing me distress and haven't gone away on their own as they are on every scan! I have had my smear test which came back fine. I have also had STI tests and they have all resulted in being negative. My question is - What can I do? What shall I do? - Do I need to see a different gynecologist? - Where can I go from here? I need help before I lose everything I love. Can someone/anyone give me some advice, help or guidance? Or even share similar experiences and outcomes? Please.

Thank you

[Hols969]

Have you tried herbal remedies - things like evening primrose really help the PMT part, there was something else that helped but I cant remember it at the mo so will try and get my brain onto it !! We do tend to be low in Vitamin D as well (I take Floradix which has helped massively from a tiredness point of view as well).

I would investigate endo further for the pain as generally pain is caused by endo rather than pcos.

I know contraceptives can cause a low libido but I have been on the combined pill for about 30 years and it keeps my pcos at bay generally, I can deal with the low libido generally (mind over matter lol), but it is good that generally you feel better until the time of the month appears.

Hysterectomy doesnt help from a pcos point of view (just so you know) but obviously helps from a period point of view. As long as you and your partner are sure you dont want children. Are you based in the UK ?

[Amycartz in reply to Hols969]

Hi,

Many thanks for your reply! 😁

I haven't but I have just ordered 3 off Amazon, evening primrose, Agnus something and vitamin B6, do you think I should try vitamin D as well?

My GP ruled out endo for a reason I cannot remember as it was in the early stages when he was ruling out a lot of things. So I will need to do some more research on this as well but what is the treatment for endo?

After feeling the way I have for the past 6 months, I never want to take another contraceptive pill in my life. My side effects were endless, not just low libido, when we even attempted having sex it was very painful and the whole experience was an absolute night mare. I was constantly bleeding I would have 2 days break in 6-8 weeks. I didn't even like being touched in general. I don't want to go back to how I was. They clearly were not right for me but I just kept getting Prescribed different ones even though my body would react in the same way. Now I have given up smoking the gynecologist thinks it is now ok for me to take them and they will work. I do not agree.

I know only removing the uterus will not help with pcos but if I have a full hysterectomy wouldn't that help? But then I would have to have hormone replacement and then I am worried I would be back to square one mentally but no bleeding/pain!?

I made it very clear to my partner before we got too serious that I didn't want children and luckily he felt the same. So we have mutually decided that it isn't something we want to do and 6 years down the line we still feel the same way and we talk about it openly with eachother in case either of us have changed are minds or even see our future with children and we still don't. I have discussed hysterectomy with him and he is on board as he hates seeing me the way I am with all of this.

Yes I am in the UK, in Wiltshire.

[Hols969 in reply to Amycartz]

Aaah yes agnus castus was it ... we actually were fostering a dog for a rescue and on her first season she became really aggressive and our rescue lady suggested evening primrose and agnus castus and it made a massive difference (so isnt all in the mind as the dog didnt know about it lol)

I would definitely look into endo again, I am not sue why it was dismissed, as pain generally is to do with endo and its quite common to have both endo and pcos. Sadly it involves a laparoscopy to find if you do have it as it cant be seen on a scan.

I would worry about a hysterectomy as I think it would be tough on the body (and I am not sure they would do it at your age on the NHS either). As hormonal contraceptive has always worked for me then I suspect I would go on HRT when I go through the menopause.

Let us know how it goes with the tablets, I am sure it will help.