Feeling low

Hi ladies

I'm crying as I write this ... I had my second op for endometriosis 6 weeks ago. This time it was excision (the first op was ablation and I had extensive endo removed). I never recovered from my first op, in fact, it made things so much worse that I became bed bound. I had my second op in December in the hope that it would help with my pain. Unfortunately 6 weeks out I still have pain and this op was no way as extensive as my first op which was 8/9 months ago. I pray it's healing pain but I'm just so scared and worried that it is not. I'm reading about women who are well a couple of weeks after surgery and that makes me more depressed. Just wish the pain would go and that I would feel well again. The prostap doesn't seem to helping this pain either and I've stopped hrt as that wasn't agreeing with me. Any advice would be great. Feel for those of you that are suffering. It's such a horrible disease. Sorry for the moan, just feeling really sad about it all. Hugs.

14 Replies

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  • Have you considered that it maybe something else that is causing the pain. Adenomyosis perhaps?

  • Yeah that is a possibility but I'd have thought the prostap would help with that. My MRI came back and said my womb looked normal but it's a tricky disease to diagnose

  • Prostap turns off the adrenal gland so tells ovaries not to produce oestrogen. Don't think it would have an effect on uterus.

  • Do you have adenomyosis jean?

  • No, I had a hysterectomy and ovary removal last March, for severe endo. Unfortunately surgeon didn't remove all endo and still in pain. Waiting on appointment with different endo specialist for second opinion.

    There are lots of things that can cause pelvic pain like adeno, ic, pelvic congestion syndrome to name but a few. So it's worth exploring these things. Just don't give up. You will get there , it just takes time.

  • Thanks jean. I'm so sorry you're struggling too especially after your big surgery. I hope you find some relief. Thanks for your input.

  • I'm praying it's healing pains as I am still getting pain from my left ovary but if it's adenomyosis I'm not sure what to do about that. Perhaps the hrt unsettled things too

  • Also if you still have your ovaries they can be stimulating the endo . Possibly get them taken out and maybe sadly hysterectomy as well . It is madness sometimes they consider just removing the womb and leaving the ovaries will fix it. Bottom line is ovaries will still work and produce hormones that can stimulate and cause pain if there is endo anywhere . On your large intestine, small intestine, appendix. Ive even heard of it in the diaphragm! It's not an issue limited to the womb it's outside on surrounding organs structures etc . Cxx

  • I had my op in December too and I am still in pain too and in some cases having pain in placed that I didn't have before.

    I am praying that the 12 week internal healing time in this attachment holds true.

    centerforendo.com/is-my-end...

  • Me too starry. Did you have a lot of work done?

  • Hi Jodie 16, am so sorry for ur situation Hmmmm is sad to hear that but ur situation is not going to be permanent. Wat I know is there is nothing God can not do, he is the doctor of the doctors, so I will urge u to trust in him for ur healing because I know he who heals will heal u. Don't forget to trust in our maker he knows all things. May he lebrate you. Amen

  • Hi Jodie,

    I hadn't my first op 6 weeks ago, which gave me my diagnosis and also quite extensive treatment for endo. I'm in the same position as you, at times I actually worry I may be worse than I was before the surgery. Things hurt that didn't hurt before and old pains have crept back in and I my mood had been severely affected too. I think we place so much on the idea of 'treatment' that it's hard to remember that it will take time to heal - at least that's what the GP keeps telling me. From everyone I have spoke to it seems like there is light at the end of the tunnel but we're actually still in the quite early weeks of post op. But I feel your pain and frustration and sadness. You are a warrior though, just keep telling yourself that. I am sorry I can't offer any more practical advise! Xxx

  • Your words have helped me a lot! Thanks for taking the time to write that. I hope we both see some brighter days ahead. Take care of yourself. Xxx

  • Hey there so sorry I know the pain thing going on and on . Con you get something good and strong from gp for pain . I know it's a last resort and slot of people get shitty about strong meds but if u need them babe I need them . And you need to get.m re referred to a consultant. Go private if you have to . Sometimes this. An speed up the process and get you some quicker extra tests scans etc to try find it . I did about 3 months of this solid pain shit after op fortunately minimising hrt helped me. But I say this doesn't for you . They are shit sometimes and miss bits of endo or cause damage in the surgery. Don't accept any crap u just hzve to put up with. What are you taking what have u had done if you pm me privately I may or may not get an answer for you but I will try. Ive had a rough ride too and got accused of drug seeking when really I was just in agony needing help . Gonna sue that bitch who said that and several others on my hit list lol . Don't look down that road that it will last forever madness lies looking down that road. St least tomorrow see your gp. Get a private consultation they arnt too bad £120 £170 something like that. Often they can ping you back on NHS following the private consult and the consul is quick . Are u in uk? Try spire mr Kremer maybe mr trehan or mr Fawole ( he is more biwel but does joint endo surgery on bowel with mr Kremer. Good luck let me know how u get on if you get chance. Beware though strong meds can be addicting but you can wean off slowly don't do it cold turkey it can be like heroine withdrawal and paranoia like u wouldn't believe if done too quick but if I need get them .hugs xxxx

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