Advice of what to do next?

Hello I am new and have been reading everyone's posts and finding them very helpful. I got diagnosed last July after laparoscopy but unfortunately they only removed one endo spot. I was told it was through my blood vessels in my womb ovaries and tubes and it couldn't be removed without taking the organs out. I have suffered for a long time with awful periods and tried the pill quite early but I had a very bad reaction to several and then was prescribed the depo. About 4 years ago I started having horrific pain in my lower stomach, pain during sex, bleeding after sex resulting in me being misdiagnosed multiple times.

Since my diagnosis and for the year before that I have been in such incredible agony I'm exhausted everyday no matter how much sleep I get I still have no energy. The depo is not helping I have tried a mirena coil but only managed three months and the pain was unbearable, migraines etc. I have been on zoladex injections and HRT since January and the side effects are horrendous still having migraines hot sweats naseau vomiting pain in my bones, I have been scratching none stop and make my skin bleed. I have symptoms of cervical cancer now still bleeding after sex nearly every time ,a watery discharge, the pain after sex is unbearable for two days. I have asked to stop the injections three times and been told to continue. Every time I see gynaecology they say I need to keep going with them or get pregnant. I have asked for a hysterectomy and been told I'm too young and they won't do it ( I'm 25). I think it may have spread as I'm having a lot of problems with my bowels now and urinating I have to really force to go at all. Recently I am trying acupuncture and Chinese medicine but so far that's no helping.

I don't know how much longer I can feel like this. I know other people have it worse and it's spread to there other organs I can't even imagine how they manage because I can't cope like this!! I'm struggling to work and the last thing I want is to lose my job. My partner is very understanding but I can never have sex or I will bleed during and we have to stop and I feel like I'm ruining his life as well. I have tried everything they told me about. I'm back at gynae this week and I don't know what to do anymore.

Does anyone have any advice please on what to do when nothing else has worked ?

10 Replies

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  • I've found diet helpful for managing my symptoms, going gluten free and reducing dairy and sugar.

    But I'm in her same position as you. None of the medical treatments have worked for me and I seem to struggle more over time with symptoms, I'm having a hysterectomy later this year but I'll be 36 this year xxx

  • Just a note about the diet stuff, while I see the point of reducing inflammatory foods, gluten isn't inflammatory or bad for us. There are very few people who actually have an intolerance for gluten (roughly 1% of the population). For the rest of us, gluten is perfectly okay.

    There has become a trend of gluten being a "bad" thing, but that is honestly just fad "logic" and isn't based on any real scientific evidence, but stripping it from your diet can have unintended negative side effects as you will also strip a lot of natural nutrients from your diet in the process.

    We all suffer enough without going through the pains of removing a normal, harmless, extremely common everyday protein from our diets.

    That said, I'm so sorry to you both. I don't know what to do either about the extreme daily pain. It seems like this thing trainwrecks your life and no doctor has yet told me how we're supposed to be able to get it back.

    scientificamerican.com/arti...

  • I definitely have at least an intolerance to it though, when I eat gluten my tummy swells very painfully, my endo pain gets worse and it also effects my mood. I wouldn't remove anything from my diet unless I felt a positive difference of doing so. xxx

  • Some people genuinely do have an intolerance to it and if you're one of those folks, absolutely do what is right for you! It's just not as scary as recent trends have made it seem for most of us, that's the only reason I said anything. It is a lot of work to cut gluten out of your diet as it is a natural occurring protein in grains which we use heavily, so it's really only useful if you're one of those few folks who do genuinely have an intolerance. πŸ™‚

  • Thank you for replying I do think I would find it very hard to cut it out completely especially with the shifts I work. But I do try to eat healthy!

  • Thank you for your advice my stomach does swell up more if I have gluten but I have to have an awful lot for it to do that! I try to eat healthy and when I have no appetite I try to have smoothies with seeds etc. Maybe I should try it!

  • Request an internal and a smear! Endo shouldnt make you bleed during or after sex! Endo is womb like cells growing outside your female organs that grow and shed like a period, bleeding into your abdomen. Blood during and after sex normally signifies a problem with your cervix .. a ectropian maybe, especially since youve had a lot of hormonal treatment!

    That would be my plan of action.

    The rest is hard to say. Treatment doesnt work for me, neither did surgery and well im older than you but no way on this planet do i want a hysterectomy.

    1) its not a cure.

    2) HRT feeds endo.

    3) ovaries are important for your health! Especially bone health.

    Talk with your gynae, try the pain clinic. Go to your GP. Think long and hard!

  • Thank you for your reply. Gynae did say if it continued I could have another smear and I will ask them to check my cervix.

    I was wondering if I asked to be referred to a BSGE centre there would be any way they could take it out as they are the specialists!

    I do know a hysterectomy isn't a cure and it could cause more problems but maybe if they take the worst affected areas out I may get some of my life back. I just can't cope with the pain anymore. I do want to stop the zoladex and HRT it isn't helping it's just causing more problems.

    Every time I talk to my gp they just tell me to go back to gynae and there isn't anything they can do!

  • I know its a pain .. Its fundamentally your decision but its not something id take lightly. If you had the full hyster youd have to be on hrt for rest of your life as your ovaries really do play a big part of your overall health, not just your female organ health! Read around other sites and get a feel for whats right, speak to many Drs and then decide. At such a young age id try my hardest to put it off!

  • I am so sorry that you are suffering so much. I am hoping my experience might help you. I tried the endometriosis diet outlined in Carolyn Levett'so book - gluten free, dairy free, soya free, low caffeine and refined sugar free out of desperation even though I was DEEPLY sceptical about how cutting out so many food groups could possibly help. ( I previously ate a conventionally well balance diet - thinking surely that was the best way to keep healthy... ) So I tried going gluten free and it helped my symptoms a bit so I decided to try the full endo diet plus switching to organic produce and toiletries where possible and using hatural progesterone cream After 3 months' trial the endo diet has really substantially reduced my pain and digestive symptoms - I 'very stopped taking painkillers and my CA 125 test score has dropped from 152 to 66 showing a substantisal decrease in inflammation. The diet might well help you too- it's worth a go.

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