I need urgent help please

[PugGirl]

Ok so I’ll start from the beginning

I found out I had pcos at 14 - I’m not 28

My body is trying to kill me!!!

So early periods irregular sometimes I’d skip 6 months sometimes I’d bleed for 2/3 weeks at a time always super heavy though.

My doctors wasn’t every helpful with the information they just said you have pcos.

By the time I figured it out I guess I was too late already a size 18-20 which I thought was huge but I’d give anything to go back now.

At the age of 20 I had my life mapped out I started a new job as a community career and I loved it! I was walking to all my care calls my new uniform was dropping off me got back down to 16-18 cloths. A new relationship too where we wanted to travel, get our own place, maybe get married start a family…

After 4/5 months of doing this job I started to get really horrible sharp pains in my right side that didn’t go away so I went to my GP thinking maybe I’ve pulled a mussel or something.

The GP said I was physically exhausted so put me on the sick for a few weeks. Then the period started like a raging hormonal psychopath.

Week 1 past still ranging

Week 2

Week 3

So after 3 months straight I’m saying to the doctors ok something not right and they tried me with different pills to stop it nothing worked.

I called them up and I said there’s a heart beat in my head I can’t walk from one side of the street to the other without feeling like I’m going to have a heart attack.

So they called me in did a blood test

Called me back the next day

Had an ambulance waiting for me but wouldn’t tell me what was wrong.

Went to the hospital was told they didn’t know how I was walking let alone talking since I had less than half the amount of blood left that I should.

So I got my first blood transfusion

And a 2nd

And a 10th

I was told Christmas Eve one year I’m putting myself at the risk of a heart attack by continuing to bleed like this… ooooh I’m sorry to be an inconvenience please kindly show me where the off switch is ive been looking but can’t seem to find it.

So I was told hysterectomy or marina coil

Since I have no children and would like at least one I chose the coil which they told me would most likely stop me having periods altogether whilst it was in there. Well even that never stopped it but it did make it lighter but I’d get pain from it most the time. Whenever it was checked I was told it was fine.

When it came to removing it the thing snapped which takes us to 2020 or 2019 but I’m sure 2020 it’s been that long I’m lost in time with it. So the doctors pulling on those strings but only half comes out and I can see she looks worried and she tells me I need to go to the hospital because it’s stuck on something and she puts the bit that did come out in a tube for me to take with. They have a look and also can’t get it out. So I have to come back at a later date for them to look with the camera where they find I have polyps but can’t find the missing bit. So I have to come back to have the polyps removed and this time they found the coil bit and removed that.

Come September 2020 by this point the bleeding is really heavy and raging again so I go back to hospital and I guess now they’re kinda sick of me. So they keep me in for a week to do test normal scan, internal, ct and mri. So they find a cyst on my right ovary 10x10 cm at the time I’m not sure on the size of it this year since they haven’t checked it since December 2020 so almost 12 months.

I’m in constant pain, I feel like I could pass out at any minute, I feel tired and weak. I have sores on my foofie from having to constantly wear pads and the sticky bits sometimes stick to me which has caused me to be sore from pulling it off ( not from wearing too long ) I have to change every 1-2 hours. I have 0 sex life a draw full of sexy Bridget Jones granny pants. I have no friends since every time I leave my house I soil myself through my clothes on to seats so I just stay home. The doctors say loose weight since I’ve now gone from 16-18-20 to a size 26-28 I’m too tired to work out I’m I move and I start peeing out blood I feel it! I bend over and the blood somehow squirts up your ass and out the top of your cheeks which is totally gross! And they want me to go out in public so people see this and smell my blood and that’s not to mention where is the energy for this coming from. I wake up and my pants are full of blood clots everything about this is disgusting and ruining my life and slowing draining the life out of me. It just feels like nobody can or wants to help me. I’ve bled now for 9 years in that time I’ve probably had about 6 months total where I’ve not bled everyday. I can’t be the only one this is happening too pcos is stealing my life and I want it back before it’s too late

[LisaEB]

I would say all this bleeding isn't necessarily PCOS. Have you had the cysts removed on your ovaries? As that could be causing the pain and bleeding? Also have you been tested for endometriosis as that's normally linked to excess bleeding. You also had polyps, so sounds like you've unfortunately had a multitude of issues. Tackle your weight, as that can help many things, but if you are constantly bleeding I imagine you are feeling run down and eating more. But if you are eating alot and not exercising or doing anything out the house, you are also likely exhausted.

Maybe trying going private and see if they an do anything for you, as the NHS can be slow and seem to have basic knowledge at times when it comes to women's health.

If they can't find what is wrong with you, maybe seriously considered the pros and cons of a hysterectomy. You have said you desire kids, but by the sounds of it, your life is miserable at the moment. I would say if you can ,have kids ASAP, but if you are not having sex, quite a bit overweight and having all this bleeding, it doesnt sound like a great idea to start trying.

Good luck with it all, I hope they find what it is, really sounds like you are having a terrible time.

[tasha-jayne5]

Hey lovely, I've not been on here for years but I saw your post and had to say something. Bless you I really do feel for you! Pcos is awful and you're definitely a lot more patient with it than me! I was diagnosed after I got married and came off the pill, I went the opposite way and only had 3 periods in a year, but they were horrendous! Only a few days but so heavy and I was pretty much bed bound I was so ill with them. When I was diagnosed they told me I'd probably get loads of spots buy they could give medication for that, loads of hair but they could give medication for that too, I'd put on a lot of weight - I just had to try and exercise and I'd struggle to conceive - they can refer me for ivf after a year of trying.

Me being me I was like nope! So I researched it and found a website called pcosdietsupport.com and when I tell you it absolutely changed my life and so quickly too! The lady has researched pcos so much she seems to know more than doctors do, she tells you about how gluten, dairy, soya and refined sugar affect pcos, they anger it. I cut all of that out straight away and I dropped a stone and a half in a few weeks, spots and hair were going away, I had so much energy, I had a 'normal' period after about 4 weeks and then again 4 weeks after that and then 4 weeks after that I was late.. turns out I was pregnant! I honestly felt like a completely new person. I know that cutting so much out of your diet is daunting and it is hard but after a few weeks it was like second nature to me and it's a million percent worth it!

I found Deliciously Ella really good, she's a gluten free vegan and her recipes are amazing! And there's loads of choice out there if you look, lots of stuff can be naturally free from those things. Honestly, reading how desperate you sound for something to help you I would give it a go.

I don't know if you can private message on here but please feel free if you can, I'd love to know how you're doing. Keep your chin up! X

[Carly93]

Hi, I haven’t personally experienced what you are going through and I’m sorry your going through this . However , I do know that diet , exercise and taking the right supplements can have positive effects . Have you done research on pcos nutrition, supplements and exercises ? Implementing these in your life can relieve a lot of pcos symptoms and through learning this and my own personal pcos type has greatly improved my health and periods. Following good pcos dieticians and nutritionists on Instagram can be very educational for anyone with pcos. Such as: @pcos_supportgroup , @the.pcos.nutritionist , @pcos.weightloss and @a.cyster.and.her.mister