Prostab and HRT

[Qanngoth]

I've been struggling with endometriosis symptoms for most of my adult life but did not know this until three years ago.

Over the last three years, I have struggled with my local health board to take notice and get the treatment I need. I was put on prostab injections 16 months ago to help with the pain while I awaited my 1st laparoscopy.

I had my laparoscopy almost a year ago where I was diagnosed with deep endo. I have since found out that it is growing into my bowel, attached to my bladder and I also have adenomyosis.

The problem I have with the prostab is the need to take HRT. I took, tibolon, but I seem to be sensitive to synthetic hormones, and they have a huge impact on my mental health and depression. Today, I saw an endo specialist and will be having surgery in the next 18 months, however, due to the severity of my endo, I have to see a bowel surgeon too. In the meantime, I have to continue with the Prostab, and I've been told I have to take HRT.

Does anyone have any similar stories to mine? or any advice on what type of HRT you have found effective? I need to go back to my GP so I'd like to be prepared.

[Rainbow2468]

Hi I'm on prostrap and not taking any hrt, my gynecologist recommended vitamin d. I was prescribed hrt but I was reluctant to take it as it can cause bleeding. I'd frankly had enough of the bleeding. And I'm doing well without it, hope this helps feel free to ask anything else if you would like to. Sending you a big hug hope you have a lovely day xx

[Qanngoth in reply to Rainbow2468]

Thank you. I've done without the hrt for over a year and feel like I'm managing with menopause symptoms quite well. When I spoke with my GP about it in January she offered alternative options to taking it. I'm currently waiting for a dexis scan to check my bone density and have upped my calcium intake.

However, the consultant I saw this week is adamant that I take the hrt. They said that my bones will have started to thin because of the prostab. And seeing as I'm going to be on it for another 18 months or so I really need to be looking after myself.

The next hurdle is getting an appointment with the GP 🤦‍♀️ That is a headache in itself!

[Rainbow2468 in reply to Qanngoth]

Yes getting an appointment is the tricky part, my GP prescribed me the tibolone, but said I won't need it. The clinical practitioner I saw said she didn't believe it was needed either. As when we go into the menopause we can have a bone loss anyway. They all recommended vitamin d, and walking, and the gynecologist also recommended light weight training. Hope you get things sorted out soon sending you a big hug x

[MrsPaddingtonBear]

Hello

I have been going to the gynaecologist for almost 20 years. I’ve had numerous operations and treatments for stage 4 endometriosis. I had a total hysterectomy 4 weeks ago. This became a medical emergency as my bowel was stuck to my womb. I spent 6 1/2 hrs in surgery, had an emergency bowel repair and a colostomy bag fitted. I had no warning this was the situation inside me. I too was on prostap and hrt. I am on evorel patches. These seem to work well and I rarely get any hot flushes. I will have reversal surgery next year. Hopefully you will get the amazing nurse/consultant support I had. Not feeling great about the whole colostomy situation very shocked and call it my little cling on as in Star Trek I.E a bit annoying, causes trouble and turns up unexpectedly and tends to be a bit grumpy! I regularly cry, tell it I hate it, I can’t cope or live like this, BUT, here I am everyday day getting up getting dressed, trying to gently walk about, not giving up. You will get through this. Best of luck.

[Qanngoth in reply to MrsPaddingtonBear]

Hi, thank you for sharing your story. I'm so sorry that you've had this experience. My Endo is similar to yours. When i was first diagnosed during my laparoscopy i was told that my uterus and ovaries are stuck to my . I also had bilateral cysts, one was removed the other burst. I have then had to wait six months for a referral to be made to the endo specialist, who I saw on Wednesday, 11 months after my diagnostic laparoscopy.

The MRI I had in August showed the extent of my Endo is much worse that they previously had thought. So next step is the bowel surgeon.

I really appreciate that you reached out to me and I hope that yesterday and today are good days. Just take each day as it comes. Sending hugs 🤗 xx

[MrsPaddingtonBear in reply to Qanngoth]

Hello

Hopefully it sounds like they are trying to cover every possible scenario in preparation for any surgery. Forewarned is forearmed as they say. Take a lot of deep breaths, get information in paper form or make notes, sometimes it can be overwhelming at appointments and it helps to be able to go over things later. I got bombarded with paperwork pre and post op, but it was helpful to go through to get help and reassurance. Best of luck.

[tofutofu in reply to MrsPaddingtonBear]

oh my goodness that sounds really hard, I hope you feel better soon and that the reversal surgery works out.

[Prettythings1]

I am so sorry to hear about your struggles. My story is very similar to yours. I have been on ProStep injections for the past two years why they keep fobbing me off regarding surgery

I am not able to take HRT because I have epilepsy, so I am permanently in limbo. It has such a negative effect on my mental health.

feel free to message me if you want to rant x