Hi everyone

[Jesslel]

Hi all,

Just joined the forum and was hoping some of you could help me as i can never seem to find any information anywhere!

My name is jessica, i am a 23 years old.

After years and years of trying to figure out whats wrong with me and trying to convince the doctors i wasnt crazy , i was finally given a laproscopy op in August where i was diagnosed with endometriosis and polycystic ovaries. They removed most of what they could but i was told some of it may still be there ( and come back ).

Since the op, all i can say is i wish i never had it done. For me everything has been worse. I knew i wasnt going to get a mircle but i at least hoped the pain would improve slightly.

Anyway, i have now had severe pain all day/all night for the last week. I am late on my period ( i have only had one since my op , which has never happend before.. ) and i wake up bloated and stay like it all day. Does anybody else experience this? I get bloated now and again and thats normally towards the end of the day but waking up bloated is new to me.. How long before you are due a period do you experience pain for? Mine seems to be getting longer and longer! Once i was told about my conditions i then attended one gp appointment where they basicly told me to get on with it which i was ok with untill i realised there was lack of information elsewhere too!

I am currently taking co codomol which i struggle with because it makes me feel terribly spacey and dizzy. Does anyone have any pain reccomendations? I tryed a water bottle last night and suprisingly that seemed to help a little.

Thank you for your time and its great to know there are others out there to talk to about this as the world seems pretty short on information and supporr the horrible diseases

Jessica x x

[Vickal]

Hi Jessica,

Can you use ibuprofen based painkillers? I can't as they effect my tummy but they are good for endo as they reduce inflammation. I have the same issue with cocodomol and be careful as you are not supposed to drive while taking it. It can also be very constipating which may be why you're feeling bloated.

I tried Tramadol instead but this spaced me out even more and I didn't get on with it at all! Felt sick and horrid. May be worth asking your Dr to try this as everyone is different and many ladies get on with it fine.

Have you tried any dietary options? There's lots of advice and info on the link below.

endo-resolved.com/diet.html

Unless your trying to conceive there are a few hormone treatments that can also help but I don't know anything about this as I've been trying to conceive for 2.5 years!

I hope you can find something that works for you soon xx

[Jesslel in reply to Vickal]

Hi Vickal,

Thank you for your reply!

I have used ibrofufen before but find that they arent strong enough for the pain the co codomol could be the cause of my bloating problem then, i didnt think of that! I think i will ask my dr about tramadol, if its anything like co codomol then i will struggle, but i think it will be worth a try :).

Thank you for the link, i will definatly check this out, i have previously tryed cutting out dairy products but didnt see much difference so i went back to eating dairy in the end. I have breifly looked into hormone treatments and although at the moment i am not trying to conceive i think they come with quite a few unwanted side affects! I may be wrong but i would love to be able to treat this naturally with vitamins, diet , excersise that sort of thing.

I will definaty check out the information, thank you again and good luck to you with everything i hope it all goes your way

Jessica xx

[Vickal in reply to Jesslel]

I agree with you regarding hormone treatments. I came off the pill years ago as I had problems with it and felt so much better without the additional hormones however that was before I was experiencing really bad endo symptoms.

Regarding diet remember there are things that you are encouraged to eat more of as well as avoid. It's a bit depressing reading the list of things to avoid at first. I read it and thought "what's left to eat?" but if you cut out one thing at a time then you can find what works for you. I tried cutting out gluten and it had no effect I also found it really hard as a lot of gluten free products use soya which is also something to be avoided. Concentrate on adding the things that are good at reducing inflammation and then it's not so bad.

Good luck x

[JellyKat]

Have you tried a TENS machine? x

[Jesslel in reply to JellyKat]

Hi jellykat,

Nope i have no idea what that is? I havent heard of it either x

[JellyKat in reply to Jesslel]

Transcutaneous Electrical Nerve Stimulation - traditionally used as a method of pain control for women giving birth. In short, it has small adhesive pads that you pass an electrical current through, in doing so, it 'confuses' the nerves on the area that are passing the pain signals to the brain (as nerve signals are in themselves, electrical).

[hannah11]

Hiya Jessica

I'm 21 and in a similar situation. Had a laparoscopy in September and while they were able to remove all the endo for me they noticed i have some of the warning signs of adenomyosis... so post surgery my periods have still been bad and the pain hasn't gone a way at all. in fact like you i feel worse. it's not a great situation but if it's any consolation you're not alone! I'm so sorry you're going through this as well though, it's horrible. If you ever want to talk feel free to message me, I totally understand where you are coming from and would be happy to talk.

co codomol did NOT work for me either but tramadol (with anti sickness tablets along side) does, although it does make me quite sleepy. unfortunately everybody reacts differently to meds so you just have to go through trial and error which is frustrating but hopefully eventually you'll find the right one.

For bloating i've found mint tea works really well for me. And ginger tea is pretty good for nausea. I've not tried the endo diet myself but i hear it's good for managing symptoms and pain. some women have real success with it. you could find a nutritionalist who specialises in women's health and see if maybe they could help you manage your symptoms through diet too. I'm about to start seeing one myself.

It's terrible that your GP left you with no information or support???! Did you have your op done by an endo specialist or a general gynaecologist? Perhaps you can seek advice from them? You should not be left feeling scared and confused, they are supposed to help you put a plan in place to deal with your symptoms!!

Did you explore maybe managing periods with the pill or something like that? There are def lots of options out there. this isn't how it will be forever so please don't loose hope!!

anyway i hope this helped you out!

Message me if you want to talk more xxx

[carolineeballard]

The first thing I was told to try is mefenamic acid, but it upset my tummy. And then I took codeine but it would make me quote sleepy, but it need take the edge of the pain.

I haven't found meds that help the pain.. and not make me feel spaced out.

Oh and I forgot to mention co-dydramol that was the worse! I took one after food and when I stood up my knees just gave way and I was on the floor feeling like the room was spinning. Getting up was awful, my mum had to help me; she said I looked like Bambi on ice.

Other things that might bring you some relief is a heat pad. It is like a little mini electric blanket. I always go to bed with mine. And it has an automatic shut off.

Hot baths also help my pain, Epsom salts are meant to be good.. but I much prefer beautiful scented lush products!

Hope someone's recommendations for meds help you out.. I'll be reading all the replies too x

[Tboag]

Hi darling, sorry your suffering and not having much luck with your gp,

Please can you say if you had our lap and removal of endo completed by a endo specialist in a BSGE centre, if not you should demand a referral to one, you are entitled to a referral under the nhs contract, check out the list and find a centre near you, then go gps with this list and a copy of the contract, read a lady called Lindle posts, she is very informative,

You can try all the pain killers and hormones in the world, but your best option is being seen by a specialist and having full excision completed, by a skilled surgeon

Good luck

Xxx

[A2207]

Co codamol doesn't touch my pain, nor does paracetamol or ibuprofen even taken together at high doses but I do find naproxen helps and then build up from there (each pain killer has a stronger dose I take the max ask your gp) I've recently in the last month began evening primrose oil, omega 3, vit c, triple magnesium and vitamin b12. I suffer daily with strange pains, back pain, bleeding etc and honestly at the moment my pain is hardly there I had my lap in October but found the pain got worse. I've suffered for years and been really bad this year. I still have endo on my bladder which they want me to start zoladex injections for. in jan 2015 I stopped the pill and was unable to walk with the pain restarted it again and now I've been off it 4 weeks and I have hardly any pain I would recommend the supplements something must be working xx