Fed up

Just need some advice on how to make my symptoms improve or things to try that might help.

I've had 3 laps widespread Endo including bowel and bladder. I have Endo, adenomyosis and interstitial cystitis. I had Endo removed by a top gynae consultant in March 2015 no improvement of symptoms so had a presacral neurectomy which is cutting of the nerves to uterus 7 weeks ago to hopefully help my pain. No endo had grown back which is good news. I also had the mirina coil fitted when the surgery was done 7 weeks ago. So far I'm feeling no better. I haven't been able to go back to work as pain is still so bad. The coil is making me bleed most of the time. I stopped bleeding Sunday last week and yesterday I nipped out for a coffee with my friend for a couple hours and I felt totally exhausted when I got home then woke up this morning feeling like I had run a marathon. I've been in so much pain all day then I've just started bleeding again. It seems relentless this coil. The pain tonight is the same agonising pain as I always have with a period but instead of happening once a month it's now once a week.

I've not had thrush since I was 17 I'm now 32 but since the coil was fitted 7 weeks ago I've had thrush 3 times. I've spoken to my consultant who says it's the hormones in the coil causing the thrush and it may or may not settle down.

I'm at a total loss with what to do. I take about 7 vitamins a day which help a little with the fatigue. I have to take Diclofenac, codeine, tramadol, amitriptyline everyday and morphine when it's so bad. I feel like a walking zombie. I've had to reduce my hours at work to 24 but at the minute feel like I'm going to have to give up work completely. I've been off for about 10 weeks now and not sure when I'll be able to go back.

For the last 2 years I don't go out anymore, i can't drink alcohol cos of all the pain relief, I can't make plans because I'm never well enough to go anywhere I just feel like my life's over at 32 I feel more like 102.

I've no idea what my next step is. I know everyone has said the coil can take 6 months to settle so maybe there is time to feel better but not sure I can cope with this for 6 months getting thrush and the awful period pains every week.

I'll literally try anything that anyone can recommend to help my symptoms I want my life back. I use to go out every weekend partying, meals out my life was so busy all the time and I loved it but now I'm lucky if i go for a coffee then spend the next few days feeling like ive run a marathon.

I've got a yoga for beginners dvd which I'm going to try soon as I feel I can. Any other ideas? Vitamins, diet??? Any info would be fab cos I don't want to feel like this for the rest of my life I'm not sure I could cope with that I want my life back.

Sorry for the massive post. I'm usually positive but I'm losing the will with this now.

10 Replies

  • I feel exactly the same as you. I'm 35 and I've had 3 laps due to endo the last one being a hysterectomy as I was diagnosed with adenomyosis - I feel so much worse now before I had the hysterectomy which was 4 months ago. I've just found out that pathology showed i didn't have adenomyosis. I'm now at a loss to know what to do to be able to lead a happy, healthy pain free life.

    I hope things settle down for you xx

  • Honestly hun I'm at a total loss with what to do next. I can't believe you had a hysterectomy and the pathology report said you had no adenomyosis. How was you diagnosed with adenomyosis? I think a hysterectomy is my only next step but I've no children, been with my fella over 10 years and sex is too painful for me.

    Id honestly do anything in the world to get my happy little life back. Ive tried to keep so positive through it all the last 2 years saying if the op doesn't work they'll do another op and another and try this and that but now they have done everything apart from a hysterectomy and I'm no better.

    I wish I had the answers for us both hun. 32 and 35 is far to young to feel like life is over.

    Sending hugs xx

  • My consultant diagnosed from my second lap - he said my womb looked diseased enlarged and irregular shape which he said was adenomyosis. I wish I knew about this forum before I had the hysterectomy as I probably wouldn't have had it done. I'm lucky in that I have 3 children. I just feel sad that I had the hysterectomy as it is so final, and then to find out it wasn't my womb causing my pain. I'm back to square one where I'm in constant pain on loads of painkillers. The only difference is I have alot worse pain and I can't do the same things I used to be able to. I'm currently being phased back into work which is taking all my energy, I hope I will be able to cope when I'm back to my full time hours. Xxx

  • Omg that's awful. How can they get it so wrong. I bet you feel so fed up. If having a hysterectomy helped your symptoms you wouldn't mind but to feel worse after it must be an awful feeling.

    My next step I think is a hysterectomy but after reading posts on here I don't think it would be the right thing to do. So many ladies like you have had the same issues.

    Do you get a lot of back pain? My lower abdomen pain is horrendous and if I get a break from that my lower back is such a deep aching that radiates down my legs. I'm wondering if physio might be worth a try also.

    Id do anything that would make me feel just a little better.

    I know what you mean with work I can't even think about going back at the mo. It literally takes up the tiny bit of energy I have then I come home and just sit watching telly and sleep. My life has gone from exciting to boring.

    Big hugs xxx

  • Hi Emma, no wonder you feel worn out with it all I am 37 and like you the last two years have been so difficult. I was diagnosed in June this year with stage 4 and like Clairew23 I have suspected adenomyosis. I am now waiting for total excision surgery, i am on my knees with the symptoms and everyday is a stuggle. After my diagnostic lap i decided to give the Endo diet a go. I have to say i made small managable changes and my partner agrees the difference was quite amazing. I still had pain but alot less, the big difference was the improvement in my energy levels and fatigue. I stopped caffeine and bread not easy i know but it is so worth it. To compare i fell off the wagon with the diet and this month i am back to crawling through each day. So i can feel it clearly makes a massive difference. I have today ordered the Endo diet book on Amazon which is on the Endo resolved website. Sorry i cant seem to attach the link for you.You've got nothing to lose at this point. I couldnt cope with the idea of a complete diet change so maybe if you could try one change at a time might be more doable.

    Thrush is hideous on its own without everything else you're having to cope with. Are they treating it for you?

    I am sorry you must feel so disappointed (massive understatement)to have gone through so many treatments and still feel like you do. Just know you are not alone. PM me anytime x

  • Thank you for replying hun. I just feel like all my positivity is slowing going away. I always try and keep upbeat but I'm finding it so hard at the min.

    The only next step I think is hysterectomy for the adenomyosis but I'm 32 no children so I really don't know how I feel about hysterectomy especially after all the ladies on here having so many problems afterwards.

    I did buy the Endo diet book a year ago but it was just before I was diagnosed with interstitial cystitis and the things in the Endo diet are things I can't eat with IC so my diet would hardly consist of anything. I was told to give up caffeine which I have but I've not given up bread so I'll give that a go. Maybe I will try the Endo diet for a couple of weeks and see if things improve. I don't think I can feel worse then I do at the min.

    I've got an appointment with my gp Monday to discuss the thrush as I've just been buying over the counter stuff but it's so expense and I have a pre payment card for prescriptions so I'll see what they say.

    Think I am seeing my consultant 4 months after the surgery so another couple of months to go. Think he's leaving it so long as it takes a while for the nerves he's cut to settle and the coil so maybe there is still time for things to get better.

    I hope the excision surgery is a success for you. My excision surgery worked and no Endo had grown back even though I was sure it had.

    Wish they could do a lower abdomen transplant.

    Thanks for advice hun. Xx

  • Thank you. It's all so very hard...it's impossible to stay positive all the time. Im like you and just try to take one day at a time, but everybody has their limits!!!

    I have decided against the hysterectomy too at present especially as they can only say they suspect i have it.

    From what i can gather i think excluding wheat and gluten can make a big difference but i dont know how that would impact the IC.

    I really hope the coil side effects settle and they sort out the dreaded thrush for you. Don't be too hard on yourself, be gentle and go easy.

    Also if they do offer you an abdominal transplant put my name down for one too 😉.

    Hannah x

  • Gluten free diet has been heavily promoted in recent years. However, I would warn against it. Despite what celebs tell us, gluten free diet hasn't got any health benefits and can actually deprive us of many vitamins, minerals and fiber.

    I suggest you research it well before giving it up altogether.

    webmd.com has got a good piece on gluten free diet.

  • I get what you're saying and had a look at the link. I wasn't thinking of celebrities, but of the Endometriosis diet and in terms of the health benefits, reducing endometriosis symptoms, pain, fatigue etc. As always what works for one won't work for everyone.

  • I'm 17 and I feel the same way, I have school coming up and I don't know what I'm going to do b/c I'm in so much pain and my gyn won't even do a diagnostic lap.

    I went to a health food store and asked about thrush b/c I kept getting it after nuvaring and they told me to try cranberry pills, they kept the burning away. Also I keep an anti fungal cream on hand such as 'canestean' or 'vagisal'

    I just found out I got PID for the past month b/c my test for BV (bacterial Vaginosis) were negative but I had it, which the ER dr said was why I kept getting thrush. If you can ask for swabs I'd try to get some down just to see if the thrush is caused from an underlining infection.

    I was also told to wear cotton under swear, not to wear tight pants for a long time, and to sleep without underwear to prevent thrush.

    I used to eat candied ginger with each meal and it kept the pain down a bit. I've heard of people eating a lot of Tumeric, Cinnamon, and other anti inflammatory foods and spices. I also used to make ginger bread cookies each period and I had almost no pain (thank you cravings) they really helped. I can post the recipe if you want me to.

    Now pain wise I carry a heating pad all the time. Add some essential oils depending on how you feeling, I like peppermint, lavender, and chamomile. Plus I also make salves and creams for pain relief that are all natural and take Epsom salt baths.

    I hope the pain calms down xx

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