Not sure what to do next.

[Suzileverell]

Hello all, just wandering if anyone has any advice on what to do next?

I was diagnosed with PCOS about 4 years ago now. I'm currently on the pill which is a life saver because before I went on it I was just on a constant heavy period. But when I do have a period they are so painful I have to live off pain killers and walk round with a hot water bottle on my tummy. I also get extream tiredness that is so bad I quite often over sleep for work even though I get an early night. I have had blood test done to check I'm not lacking in anything and all has been fine.

I had a laparoscopy done this year to check for endometriosis and none was found. But they did find my ovary was stuck to the pelvic floor wall. They moved it back into place there and then but they still don't know what caused it and I still have the pain there.

I also seem to constantly get UTI's and yeast infection.

I don't know what to do next. Are theys just symptoms of PCOS that I've just got to learn live with or is there anything els I can do? Or is this a different health problem all together and nothing to do with PCOS? My Dr doesn't seem to know either.

I have tried changing my diet which has helped but only by a little bit.

I've just had enough of feeling tired all the time and being in pain. Would appreciate any advice. Xx

[Rach82]

Sorry to hear you are suffering. I have quite mild pcos so can only offer general advice. For period pain i swear by gentle yoga stretches (i use an app called down dog) or just a short walk outside. What kind of diet are you following? There are a lot of good websites with pcos diets. Try cutting out white carbs and eat lots of green veg; also iron supplements can help with tiredness. Make sure to drink plenty of water, cranberry juice or fruit/mint tea to help prevent uti infections. Hope this is of use and take care of yourself xx

[Suzileverell in reply to Rach82]

Oh that's really interesting I have thaught about trying yoga I'll have to give it a go.

I have cut dairy out to start of with because I done a test that came up as possible lactose intolerance so I'm giving it a go. It would make sense because I also have funny bowel movements my Dr put it down to IBS. I'm also a vegetarian so I eat lot's of fresh fruit and veg but because I've cut dairy out I'm going more towards vegan.

Thank you so much for you're advice, I really appreciate it. Xxx

[greengreen]

Hi

Sorry to hear of your pain. It is awful when you don't feel you are getting diagnosed correctly.

With the PCOS I have similar symptoms you have described. A change of diet and regular exercise does help to ease everything along. It does take time though.

If your over tired it could be that you need some further blood tests to see if you are lacking in something. I am low in iron so take supplements.

Hope this helps.

[Suzileverell in reply to greengreen]

That's reassuring that diet can make a difference. I have found gentil walking helps as well. Because of it I am now a dog walker because I fine it really does help and because I lost my last job because of the pain.

I'll have to ask my Dr, I did become anemic before I was diagnosed because of all the periods I was getting. But since the other blood test have been really healthy.

Thank you so much for the advice xx

[0492]

Hi, I am quite similar. My periods become further apart and then I end up with 1 constant period that just doesn't stop however I do get a free day every now and then. I had 1 for 5 months a few years ago and then got pregnant, after having my daughter I hoped things might have changed but it started to happen again so I ended up back on the pill. Unfortunately I can't not be on the pilI. I dont know what else i can do or if theres anything else i could take.

My drs isn't very good though as when I first went to them with what I believed was wrong they pretty much laughed but after 4 scans I was proved to be right. When I was having the constant bleeding I called my Dr or visited him every week and all he said was it'll stop next week. I got the idea that i just have to go on the pill and that i wont get any help unless I'm trying for a baby. I managed to see a locum Dr and she said that my Dr could have given me tablets that would have stop the bleeding!

I always have that period pain feeling, cramps, I bloat alot, always really tired (I think my active 3 year old also contributes towards that) and I always do and always have suffered with headaches that can last days which is another reason I didn't want to be on the pill as they can make them worse.

There's is not enough advice and support out there and we're left wondering and just trying to deal with it. Any one similar have any success without the pill? Or even anything that helps with the symptoms? I'm not over weight, I'm quite active, I eat well but do love a treat, I only drink water and a few teas and I havent found that exercising or changing my eating habbits has helped at all.

[Suzileverell in reply to 0492]

Thank you for your reply. I'm sorry you've had to go through this! My Dr was the same to start of with every time I went I just got given pain killers and IBS tablets and he told me the tiredness was because of stress. One day the pain got so bad I couldn't move so I got taken into hospital because they thaught I had appendicitis and that's the only reason as to why I finally got a referral to have a laparoscopy and scans.

I'm the same when it comes to weight, I have actually lost weight instead of gaining it since I've had theys symptoms. I find that diet is the only thing I have left to try as well as pain killers and the pill.

I would love to be able to come off the pill in the future as well. Sorry if this is a bit personal but there's not even any other reason I have to be on it because I can't have sex because it so unbelievably painful. I would also love to one day have a baby so I will have to come off it at some point.

Hope you manage to find some way of helping with the symptoms. Xx

[0492 in reply to Suzileverell]

Mine gave me IBS too. Oh that's not good, it's a pain trying to get a referral in the first place but at least you got one in the end!

I do put weight on easy and find it harder to lose but what ever the weight I've not noticed a change in symptoms myself. My weight constantly varies from just under 9st to just over 9. Someone I know that has it says when she keeps her weight down it helps but she's the opposite to me, she has normal to irregular periods whereas mines prolonged.

Oh no, ah i hope it calms down and you find a way that works. Thats ok, doesn't bother me, literally once you have a kid nothing's too personal you'll talk about anything. Hope you don't mind either. I can/do have sex but there are times when it's very painful (usually in certain positions) and I tend to get a sharp pain that feels where my ovaries are. I also have no other reason to be on the pill either, everytime I finish a pack I consider stopping but because I know what is likely to happen I just take it again 😒

Aw lovely, I hope you manage to sort things! We are planning another baby soon, we were very lucky and got pregnant on the first try with our first kid and no help with medication etc at that point i had been off the pill for 11 months, known i had pcos for about 9/10 months, had a period for 5 months, decided to try in the aug but had our first opportunity 3 months later but now I'm abit anxious incase it's not so smooth as I know more. I hope all goes well when you do decide to have one.

Other then the pill the only things I may use is a hot water bottle and Nurofen. Do you ever get nausea? I get it quite often, usually of an afternoon and have done for years. I'm not sure how related that could be or not.

Hope you find something that helps 🤞 good luck.

[Hidden]

I don't recommend doing yoga unless its savasana while having cramps, as I have bad PCOS, cramps and tried yoga thinking it would help the pain and it actually made it worse. Generally movement of any kind makes my cramps worse... I do yoga on non period days however and that seems to help some. Staying hydrated (4 liters a day), regular spinal adjustments and heat helps keep the pain down as well.

[Suzileverell in reply to Hidden]

Oh that's interesting it makes you're pain worse. I guess it can affect people in different ways. Xx

[Hidden in reply to Suzileverell]

I've actually heard the same from a couple of people in my American group. Everything is inflamed down there rather than actual muscle cramps, so it doesn't do much for cyst/ovary related pain I imagine. Movement and inflammation don't go well together.

[Suzileverell in reply to Hidden]

Fascinating!

Actually thinking about it now make sense as I've tried physio therapy as well because I was told I could have an overactive pelvic floor. Because sex is unbearably painful sorry for the information lol. But the exercises I did helped if I wasn't on my perio. But if I was it made no difference if anything it got worse.