Why is it always a battle :-( : Hi all... - Endometriosis UK

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Why is it always a battle :-(

dawntildusk profile image
11 Replies

Hi all.

Feeling a little lost again on my rollercoaster ride and looking for some advice.......

I had my second 3 month prostap back in sept along with tibolone hrt this time. As expected my symptoms got worse before they got better. the idea was that if this worked i would be put down for a hysterectomy. During this latest injection i developed persistant pain in my right hip which at times was quite severe. I did not have this prior. It feels like its bone pain and is different to my endo pain. I went back to see my bsge specialist again and he is adamant that this hip pain is not gyaecological nor is it to do with the prostap so has put my treatments on hold now until i get my hip problem resolved. so now im not taking anything at all so just waiting for the prostap to wear off and the fun and games to begin again :-( he said that my gp must refer me to ortho to get this sorted first. so... my gp sent me for an xray which was clear (apart from showing signs of degenerative sympysis pubis) and my bloods show vit d deficiency but now they say that is insufficient for a referal to ortho.

i really thought it would be the prostap especially as it has eased over the last couple of weeks but is still there. if i had a hyster does it mean i would suffer the same then? sorry for the moan but it is really getting me down at the moment as the days, weeks, months, years are just passing me by :-(

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dawntildusk
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11 Replies
JeanOsborne profile image
JeanOsborne

Hi Hun it is the prostap. It can cause bone pain.

dawntildusk profile image
dawntildusk in reply to JeanOsborne

i thought he would just say yes it is just the prostap and it will go. im assuming it will just gradually disappear?? if the prostap mimics menopause does it mean if i do have a hyster i will get the hip pain then?? does that make sense??

KA410 profile image
KA410

I had prostap for a few months from December 2015. I had terrible joint pain, particularly in my hips. I stopped the prostap after 3 month. The hip pain did settle but I think it took a month or so. I have since had a total hysterectomy and am not suffering any joint/bone pain so I feel it was a side effect of the prostap rather than of the menopause.

dawntildusk profile image
dawntildusk in reply to KA410

thats encouraging to know. have been really concerned thinking i may suffer from that permanently if i have the hyster. how is your recovery going? did they remove your ovaries? and are u taking hrt?

KA410 profile image
KA410 in reply to KA410

Yes, both ovaries were removed. I am only 36 so consultant said I needed hrt. I take Tibolone. I started it straight away and haven't had any menopausal symptoms at all. My surgery was in September. I had appendicectomy and bowel repair at the same time. The first 4-6 weeks were hard but since then I have felt really well. I am back to work now full time and am running again every evening. It was definitely worth it. I just hope I stay well long term. I've seen so many stories of people still having terrible issues even after hysterectomy.

dawntildusk profile image
dawntildusk in reply to KA410

its good to hear a positive story. have u noticed a change in your mood or memory?

KA410 profile image
KA410 in reply to dawntildusk

No, not at all. I really don't feel any different, except that I have no pain now. I'm glad I did it. I have two children already though which obviously makes it a much easier decision. What age are you? Do you have kids? Are you quite keen for hysterectomy?

dawntildusk profile image
dawntildusk in reply to KA410

same age as u with 2 children. not particularly keen on hyster but slowly accepting it is what needs to happen. its the only option ive been given. its just so final. would be easier if they could say by doing this u WILL be better. but obv they cant guarantee.

KA410 profile image
KA410 in reply to dawntildusk

I know, that is what makes it hard, the thought that you could do something so huge and so final and then still be in pain and still have endometriosis affecting other organs. It's a big decision. x

dawntildusk profile image
dawntildusk in reply to KA410

will get there. thank you all for your replies. it really helps to get advice from others in the same boat. x

dawntildusk profile image
dawntildusk

went to see a bone specialist about the hip pain yesterday and he feels it is likely to be a side effect of the medication, especially as it is now easing. i do have vit d deficiency too but thats prob just coincidental. hes doesnt feel like there is anything untoward going on bone wise so is going to speak to gynae to see if they want any tests so they can proceed with the hyster.

my only concern now is that my period still hasnt returned. the last couple of months have been pain free and ive been period free for nearly 5. is this what it will be like if i have the hyster? if so it will be bliss or am i stupid having the op when my symptoms are so much better now? can they check if my ovaries will function again? i know when/if things do kick in again its likely to be back to how it was. ive waited so many years to get some resolution but now im confused as to what is my best option. was easy when my symptoms were present. any ideas ladies?

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