Pain returns

[Lornalost89]

Hi all

I feel like it's silly of me to ask as I'm 100% certain people have experienced this however I will ask anyways.

I was wondering if anyones had a similar experience.

Possible DIE Rectosigmoid, uterus fused to bowel, thickened endometrial lining, current kidney/urine issues, umbilical oozing, back/leg pain etc. Ongoing problems for 20yrs and counting.

In June I started zolodex and within days 90%of my symptoms disappeared, I've had a FANTASTIC few months.

Now suddenly it's back. Those similar pains have started. The twisting and tugging unable to cough/ sneeze without even holding myself. I feel like I've been knocked right back to square one 😭

I started HRT roughly 2 weeks ago and unsure if this is part of the issue or its just zolodex not working any more 😭

[ClaudiaGrace]

I had a similar experience with deinogest, 6 months completely got rid of the pain so too long to be placebo, then it returned, I think it’s maybe not as it was before so I still take it but yeah it’s frustrating. I suppose my only other thought rather than the endo being tolerant of it was that maybe something about the medication working to repress the condition can also be painful but that is probably just me trying to placate myself.

[Easterbunny1]

I am on prostap and had tibolone HRT from the start. Had 6 months of massively reduced symptoms. Still had an ache in my left side, but I know there is a cyst there. I also have deep infiltrating endo that has grown into my bowel and I felt an ache there. But the rest was great. Had my third injection a month ago and it has all gone a bit wrong. Bad reaction at the injection site. Followed by crippling anxiety, heart palpitations and high blood pressure. GP has changed me to HRT patches. Solved the anxiety which was genuinely awful but now I’m bleeding heavily and abdominal pain is back with a bang. Don’t think I will be having another injection. My body cannot tolerate it 😩

[Sunset-lady]

I'm very similar in terms of diagnosis. Can I ask about belly button oozing. Is this a thing to do with endometriosis? My belly button has done this all my life. It's also really hurting me at the moment. I'm on zoladex and it stops the bleeding. I take HRT but more progesterone than estrogen. (2 utrogestan and 1 pump of progesterone cream) and I pump of estrogen gel. If you are estrogen sensitive which most of us are with endo then I'd recommend this approach as it's usually estrogen that sets everything off. If you had your jab 2 weeks ago too and started estrogen at the same time then that will make it worse as the injection stimulates everything. I get excruciating pain the day after my injection then it calms again. I need the injection early too as it runs out in my body which happens to a lot of women so that might be a reason for the return of pain. Finally if you have been drinking alcohol that will flare it and other foods particularly excessive sugar make my pain worse. Caffeine does too at times. I've gone mainly Paleo and taking out dairy has really helped. I'd also take magnesium. Vitamin C, D and K and selenium and collagen which seem to help xx I'm 51 so they want me to go into menopause but my body seems to be putting up a fight.

[Sunset-lady]

You could also swap to Tibilone which is VERY low HRT but will still protect your bones x

[Lornalost89]

Hi. Thanks all

It is tibilone I'm using. For all my life I believe hormones have been a huge problem and it's just strange as soon as I've started HRT my symptoms are back with a bang.

From the pain I'm having it's very similar to when I've had cysts but my scan in August was all clear showing the zolodex was working. But in such a short time I've done such a huge u turn.

I dont drink alcohol, my diets as balanced as I can get it in order to avoid flares, I exercise regularly

I'm 36 so the specialist said the plan is long term zolodex as a study shows this is better than surgery. But if this is the start of a decline in this working I don't want to continue. Right now I'm putting things into my body and no relief so it deems it pretty pointless to me. I have my next app in January so I'm going to TRY and hold out until then to say I've tried.

With regards to my belly button. They belive this is linked. It's cyclical, extreamly painful and I can remember this happening as far back as 20yrs ago and was probably one of my first symptoms

Currently it's the one thing not returned so far.

My specialist was very adamant my endo can't grow/ worsen while on zolodex so I'm just at an utter loss as to how I'm back here. I think it makes it even harder the fact for the past 4 months I've been thinking how Bliss it was to not have this pain. Don't get me wrong I wasn't pain free and have major back/ flank issues which I'm having looked into via urology but this "ovary" pulling tugging ripping had all gone 😢😢 I'm rambling now it's just such a struggle to think what we have to deal with.

[Lornalost89]

Also I just wanted to add. I had very very minor menopause symptoms. My mental health improved. My moods improved. I felt genuinely fantastic and now I feel like a washed up rag