I don't know what to do next! : My Endo has... - Endometriosis UK

Endometriosis UK

64,602 members49,655 posts

I don't know what to do next!

Caitlin profile image
9 Replies

My Endo has gradually got worse and worse over the last 3 years. I used to be ill for maximum 3 days at a time and now I'm basically always in some kind of pain, not to mention horrible hormonal headaches! I've been on Cerazette for a good 18 months now and it just isn't doing anything; I get bleed throughs most months and even when I don't I'm still in pain. No drugs seem to work, despite being on a concoction of Dihydrocodeine, Paracetamol, and Ibuprofen (Unfortunately I'm on Prozac so I can't take stronger NSAIDs). This means I sometimes have to miss Uni and catch up on lectures and get continuous extensions on work because I'm just in too much pain and on too many drugs to be able to function. I am worried I'm going to have to drop out of Uni.

Secondly, sex has always hurt for me, which at the start when I was 16 I put down to being new to it and I didn't put it down to endo the first few times, but 2 years down the line and I'm still hurting I realised something wasn't right. I've had all the tests and all is clear, but still pain, so it has to be the endo! I've also started bleeding for a couple days after sex, and then it goes away again, obviously not good! Not to mention it's only getting more painful for me. This isn't great, not just for me but for my partner too because he doesn't want to hurt me and I can't help saying ouch every time, so it's putting some strain between us. I feel so guilty for not being able to do what he wants without having to stop him because I'm in too much pain because of this stupid disease!

Basically what I'm getting at is what do you ladies do if sex is so painful you can barely stand it?

And also, I don't really want the Mirena coil, so I'm looking into the Depo Provera injection, has anyone had any experiences with this? Good or Bad? Any advice at all is appreciated!


9 Replies

Hi hun

im in the same place i have constant pain everyday some days "just" acheing pain throughout the whole day that isn't actually " just " its very painful and theres the really intense stretching pain like someone is tugging at your insides and i constantly get one of the two, im always feeling dizzy and light headed/ weak. I was also on cerazette a few years ago and that made me feel terrible hormones went out of control i was stressing all the time, periods went none existent after i stopped taking it , once every year i had to have ovarian drilling to get them to every 3 months but i do also have poly cystic ovaries.

Caitlin profile image
Caitlin in reply to

Sounds similar to my pain, everyday starts with 'just' an ache, as you say it's still painful! but I usually have a stabbing pain, literally like someone has stabbed a knife in me and is twisting it round. Similar too with the weakness and light headedness, I always get that and recently I've started blacking out some days, I don't know if that's weakness or the pain or both but either way needs sorting! Cerazette hasn't been too bad for me, I just don't think it's helping me and I need something that will! What are you on now?

in reply to Caitlin

im not on nothing at the moment because im seeing a fertility specialist so really its just the pain killers tramadol when the pains really bad and other times naproxen and codydramol. i have endometriosis stage 4, polycystic ovaries and adenomyosis. I have blacked out before aswel i went shopping with my mum and my eyes just went all blurr and i could hardly see the people just walking past me and i blacked out. I know the knife twisting around feeling to you get a mixture of the pains but no matter what its always that constant ache throughout.

Caitlin profile image
Caitlin in reply to

Ah I see, good luck, it's a shame this disease causes so much trouble in fertility too! They suspect I have Adenomyosis too, I want to try to get an MRI to see if that shows anything, but having to go private for it otherwise it'll be another 9 months down the line! Another cocktail of drugs that make you zombie like, I hate them! Yes, that's exactly what happens to me too, it's awful! I hate this disease with a passion! thank you for your input, it's really helped knowing someone is very similar to me, even though I know how awful it is! All the best to you though :)

in reply to Caitlin

No problem i know its awful! every time you take the pills they get harder to swallow. It makes me feel like a druggie. x

LenaVanAusdle profile image

I was on the depo proverbs for 9 months (3 injections). It was the worst experience of my life. I gained 36kg in the first three months. I bled every day for 8 months. The nurses convinced me that the second injection would help me "normalize". And then said I was crazy when I went back for what was supposed to be my third injection, and wouldn't let me talk to the doctor until they had given he the third injection.

Now that you've heard my horror story. I know other people who were okay on it.

I had the most success on depo lupron. The only side effect I had was hot flashes, and I lost almost all the weight I had gained on the depo provera.

Caitlin profile image
Caitlin in reply to LenaVanAusdle

That sounds awful! I'm so sorry, as if Endo isn't bad enough on its own without that! I do have a bit of a problem with weight and I know I most definitely couldn't hack gaining anything, so I do have to be careful what I'm on, bit of a gamble when it's hormones though! I'll definitely have a look around for more info on both, the lupron does sound better side effects wise, so I guess it's research time! Thanks for the input.

LenaVanAusdle profile image
LenaVanAusdle in reply to Caitlin

No problem. Having endo can be so horrible. I was stage 4 when I was diagnosed. My period would come every 25 days like clockwork (minus my time with lupron and provera). I would spend the week before weak, sick, tired and in wretched pain. My period would last about 8 days, where I could barely get out of bed from the pain and tiredness. I blacked out almost every month because I would bleed so heavily. Then the week after my period I would be weak and tired and in pain from recovering from my period. I would have about 4 good days a month. And I have a sensitivity to most pain killers so I could only take 1 or 2 ibuprofen without getting sick.

It's nice to be able to say this to people who won't treat me as though I am exaggerating, that it couldn't possibly be that bad.

classiebird profile image

I was in constant pain everyday until I had my 2nd lap at few weeks ago.

Try amitriptyline at night. Was a godsend to me. Helps u sleep and helps take d edge off d pain. It did take d chronic fatigue worse so I had to reduce d dose but sure it still meant taking less of d dihydrocodeine paracetamol and ibuprofen.

I had a really bad experience with depo as well. Put on loads of weight and went back little crazy. I found cerazette ruined my concentration wen I was in uni and made me depressed. Still to dis day I have problems remembering d stuff dat was in my 2nd year exams.

But the best pill I found was nuva ring. Took all my period pain away with hardly any side effects and kept it away for 4 years till d pms pain started and gradually became a daily pain. Have stayed on it since lap and keeping everything crossed dat this post op bliss will be a long term thing.

My next prob is deciding whether to stay on it or come off and try forward baby. I'm inclined to stay on it cos I'm afraid coming off it will encourage d endo to grow and d pains will come back.

Oh I just realised ur on an antidepressant already . So actually gabapenten mite be better for u instead of amitriptyline. Sud do d same job. Actually it may be better once u get used to it.

Hope u get some answers soon.

You may also like...