Symptoms just seem to get worse and worse! Anyone used Replens MD?

Currently on monthly decapeptyl injections since finding out in November I have very severe stage 4 endo. Next op to try and sort me out is in late April so feel like I am crawling towards it at the minute. Pelvic pain is so so bad. I was kept on microgynon pill for the first 2 months with the decapeptyl to try and prevent me having an initial bleed. So as instructed I stopped the pill in January. Surprise surprise I had a period. It was horrendous!!! Not so much the bleeding but the pain was awful. All the pain relief just seemed to aggregate my stomach and I can't even tell you how much I screamed out loud when having bowel movements! Rang the GP as the literature for decapeptyl says if you bleed after 2 months seek medical advice. He was useless he just said oh I'm sure it's normal and said I have to remember I have severe endo. So basically just get on with it. This was a Friday by Sunday I was in dire straights! Had to call 111 they got a doc to call me back. He too didn't really have a clue so told me to just take max dose of paracetamol, naproxen, Tramadol and to take oromorph if needed (which I do have at home for times when the pain is extreme). He didn't feel the need was there to speak to the on call gynaecologist! Jeez what would have to happen to speak to him then. Ridiculous!! So by Monday things are no better so I just rang my gynae's secretary she was lovely and said he wasn't in but would get him to call me the next day. He did and I am lucky cos he is a really lovely understanding gynae. He is an endo specialist and will be operating on me with one of the UKs best bowel surgeon so I know I'm in good hands for the next op. He explained that it was a period most likely caused by stopping the pill cos although the injections will have shut off my ovaries the pill would have still been doing something to my womb. He said once calmed it shouldn't happen again but if it did I would need to go up the hospital as it's not normal. The bleeding calmed after of a week but the pelvic pain and all my other symptoms are just dragging me down so much. I had my 3rd decapeptyl injection just over a week ago and feel awful. Now not taking the pill aswell I seem to have a load of new side effects. Sore boobs and extremely painful sex. It's upsetting as the whole time I have suffered from this stupid disease sex was something I didn't find painful. Occasionally uncomfortable but this is horrible. I had a google last night and came across Replens MD. Apparently it can help so have ordered some and I'll give it a go. So I was signed off work last week due to the pain and had been off a bit the week before when the bleeding was going on. I really need to try and get back this week but the pain is just so bad. It had eased a bit fri just gone so I thought I'd get in with some housework. Big mistake as it's just flared it up really bad again. It's upsetting as I'm home alone this weekend with my 4 year old son as my husbands working and I can't even take him out anywhere. It takes everything I have just to get down on the floor and play games with him. I wish I could afford to not work at the minute but it's not really an option. Roll on April for my next op. At least we are in February already. Hope everyone's not in too much pain today.xx

4 Replies

  • So sorryto hear you are suffering so much and with a young child,very upsetting.Glad you have a sympathetic gynae and on the way to surgery.Have you tried a Tens machine or infra red heat pad -I have just ordered one,following a post saying how much the heating pad was helpi ng her pain.Hope the decapeptyl injection kicks in soon - mine took a month to have effect,but afterwards was miraculous.

    Really angers me,how endo pain is not taken seriously by so many doctors,though there are also lots of very sympathetic and caring doctors out there.My Gp will not give me any more than tramadol or dihydro,as allergic to morphine,but have been given pethidene injections at hospital or from out of hours doctors.Sometimes you have to make a huge fuss even to get a doctor out - I am disabled also,so they are good atcoming out but wish I had stronger meds at home ,to stop having to call.My most recent experience involved over 2 weeks - 2 gp visits,2 out of hours Gps,then an ambulance.Sorry gone off question nopw.

    Just to le t you know you are never alone and there is always someone on here who can help even if just to empathise with what youre going through.

  • Thanks for your reply daffodil. Sorry to hear of your suffering too.

    I do have a tens machine which sometimes is very good at distracting me from the pain. It's been permanently attached the last few days!

    Is that the heat wrap thing you've got? I saw someone mentioned it on here. Where did you get yours? Got my hot water bottle on my back at the minute.

    Had such a bad night last night. Was crying with the pelvic pain at 3am and literally felt like my right ovary was being strangled (that's the best way of describing it). Was in floods of tears on the phone to the doctor this morning and he has signed me off work for another 2 weeks. Feel like an emotional wreck.

    I have had 3 months on decapeptyl already so I'm wondering whether my body is not coping with it. I have left a message for my gynaecologist at the hospital to ring me as my GP said I should let him know how bad I'm feeling. I honestly don't feel any benefits from these injections.

    I agree with you about not enough docs understanding about endo. Although I feel better supported now by the NHS I can't help feeling it's too little too late! If they'd listened to me years ago my endo might not have got so severe. I have what's called a frozen pelvis, do you know much about that?

    Hope you are not in too much pain at the minute.x

  • Up at this time as just cant sleep with the pain - taking 8 dihydr oor 8 tramadol p /24hrs,8 paracetamol and 6 gabapentin,plus hot water bottles back and front!Still in too much pain to sleep!It is the heat pad that someone recommended a few days ago -I havnt received it( from Amazon) but it has been dispatched so hope to get soon!

    I have stage 4 endo,dense adhesions and possible adenomyosis and Gp thinks it has now penetrated my colon,so having lots of additional pain and toilet issues.Gp has requested an emergency gynae appointment and have a surgeon appointment later this month re the adhesion pain.

    I think a frozen pelvis is when pelvic organs are bound together with adhesions and so they don't move around all.I have not been told this,as it is 10yrs since my last lap,but I suspect this may be the case for me.I have had lots back problems and had physio for sacro illeac pain.Physio said my pelvis was immobile and gave me exercises but I have found them too painful to do as it literally feels as if my insides are ripping apart,even taking a deep breathe.Do you experience this - mixture of stabbing ,pulling,tearing pains.,sometimes like a stitch.I have been told this is adhesion pain.

    You strangling pain sounds very like adhesions,perhaps sticking ovaries to pelvic wall?It is ahorrific,nauseating pain.I so feel for you also.It is great just to speak with others and know we are not alone,though not great to read how many of us are in such pain!

    Think that Decapeptyl should be helping by now,so maybe you should not have the nextone and ask for somethings else.We are all individual in our reactions to medications.Unfortunately for you,maybe this is not best drug.Though - I was told that with any hormonal treatment,Gnrh or pill it can take the body 3-4months to adjust,so maybe worth trying another months jab?I was very lucky that after an initial month of worsened pain GNRH agonists were miraculous in stopping every bit of pain.I did manage 2 yrs,on and off them but now no more as I have osteopenia( though I think that is from steroids for other conditions,more than GNRH as I had add back HRT for some of time,until developed a blood clot !

    Decapeptyl will also be giving you menopausal symptoms,so could be making you feel low and emotional.In the end you have to weigh up pros and cons.In my case the relief from periods and constant agony was worth the odd hot flush and a few hairs on my chin!Strangely,I felt very much more balanced in my mood on the decapeptyl.I am 48yrs ,so perhaps nearing menopause naturally,so maybe it was less of a hormonal swing for me?

    Do you have any help with your son -friend,sfamily who could help you over this bad patch?Forget all uneccessary housework -the house will stay standing!You need to be kind to yourself -you are ill,even though people cant see your pain.

    Well am going to try sleep now.Feel free to pm me anytime.

  • Thanks again for your reply. Sounds like we both experience very similar symptoms. Yes I too get a mixture of stabbing, tearing, pulling pains. I also feel like my ovaries or that area, makes grumbling kind of sounds have you had that?

    It is really hard having a 4 year old with this illness, luckily my husband and family and friends are great so I have a lot of support. It's funny though I know they care but nobody really understands unless they've had it themselves. That's why I come on here a lot as we can all relate to each other.

    Going to chase up my endo surgeons secretary today as not heard back from them. I'm sure I'm meant to be seeing him this month so want to chase that appointment so I can discuss all that's been going on.

    Best of luck to you with all you have comin up. Just message me if you ever want a chat.xx

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