Saw a specialist

[Sunset-lady]

I saw a specialist in endometriosis last week and it was eye opening. I had to pay for it or wait 12 months so I opted to go private. I spent over an hour with him and he was incredible. He explained everything and was very practical. I had a list of questions and he answered all of them. I already know that my cervix is attached to my bowel and left ovary so i need an MRI scan. I had no idea that I had such severe endometriosis as I'm no longer in pain. The pain stopped in my early 40s. Before that it was hell but I normalised it like others on here. He spoke about zoladex and going on this with add back HRT. This seems to be the most sensible route for me as I'm 50 so SHOULD be near menopause. I asked him if I was bleeding because of the HRT and he said most definitely. He said I could have already gone through menopause but the HRT was making me bleed along with fibroids and adenomyosis. Without HRT I am a wreck. I cry all the time and cannot function so it's so hard. You feel like you are choosing between your physical and mental health. He said that I could go on zoladex for 2 to 3 years (much longer than I thought). When I asked about bone shrinkage he really dismissed it and said it's happening with age anyway but at least being on zoladex would help me to be able to exercise whereas at the moment I can't due to constant bleeding. I came away a lot more confident about moving forward. It worries me how many women are pumping away on estrogen with women on forums telling them to self medicate. Estrogen can cause such problems depending on how your body reacts and metabolises it. It's a real balancing act for some of us. Thank you for all your support on here. It has been such a rollercoaster since my abandoned hysterectomy but I'm feeling much more positive moving forward.

[Honeybeehappy]

Hi there. Really interesting to hear that. I’ve never had a lengthy conversation other than hurried discussions and reactive plans with many clinicians. They’ve all been great but they’ve assumed I know all the details and mechanics of how endo is working on me . I know what endometriosis has done to me and what I’ve coped with since I was 11 and having mad periods but it’s never really been explained in any kind of robust dialogue. After 2 bigs ops and a lap in the past, I’m now at a similar age and stage to you. I’m on month 3 of Prostap and Tibilone which is great. I’ve been on it before many years in the past as part of post-surgery treatment and preparing for ivf attempts. I’m waiting to hear how long I can stay on it for past the 6-month dose. I’m also on a waiting list for cyst and ovary removal - prob be another year. I’ve also been offered a hysterectomy which I don’t want. Can I ask why your hysterectomy was abandoned?

[Sunset-lady in reply to Honeybeehappy]

Hi thanks for responding x my hysterectomy was abandoned as they found stage 4 endometriosis has fused my cervix to my bowel and left ovary. The consultant said he has patients who have been on prostrap for years and years!

[Honeybeehappy in reply to Sunset-lady]

Interesting. I’m also stage 4 (diagnosed in 2010) and previous major ops have been long and complex so not sure a hysterectomy be possible for me anyway. I imagine my pelvic area is a massive stuck together tangle now! 😁 good to hear that long term Prostap is supported in your case. Hopefully my gynae sees the benefits the way I do.

[GreenViolin in reply to Sunset-lady]

Sorry to hear about what you’ve been going through. I’m interested to hear that your hysterectomy didn’t go ahead due to fusing. My surgeon gave me the option of hysterectomy partly because my cervix, bowel, left ovary and rectum are fused. I’ve declined hysterectomy and opted for excision because I don’t feel ready to lose my womb yet. Was the surgery stopped because he wasn’t expecting to find what he did and would need other specialists with him in order to continue?

[Sunset-lady in reply to GreenViolin]

It was stopped because they weren't expecting it and it was beyond my surgeon's skill set. The adhesions have pulled my rectum high up so it's a complex procedure. Even the endo surgeon I say last week wants to avoid surgery.

[GreenViolin in reply to Sunset-lady]

That sounds like a pretty tough place to be in. It must have been so disappointing to get that news when you came round after surgery, then have to try to figure out what the next step might be to make your symptoms bearable. I hope you manage to find a solution.

[Sunset-lady in reply to GreenViolin]

Than you. It was at first very upsetting as I have 5 fibroids causing problems and i am still flooding. What it has taught me is that you need to fight hard for help on the NHS. My surgeon was about to release me from his care with no further steps and I was horrified. A referral to an endometriosis specialist can take up to 12 months where we are so I went private and it was the best 200 pounds spent.

[Sunset-lady]

Hi, he's the leading endometriosis specialist in the whole of the North East. He heads up an entire clinic and has been doing it for 30 years. He is the second opinion I've gone for. He said he has loads of patients on zoladex and prostrap and they have been on it for years. I really quizzed him about it and he was very bemused. I have read a lot about zoladex and the side effects sound rough but everyone responds differently to these injections. For some women they don't even stop the bleeding at all. To be honest it's not endometriosis I need treating it's the bleeding. If that stops I'll be happy.

[SavageGold]

Hi sunset lady.I just wanted to say I'm glad you're on a path now. If this is the same specialist in the North East that I researched I'm happy for you. I nearly came down to the North East from Scotland to see the team for surgery, but my Depo injection finally got re instated so I didn't have to.

I fully understand where he's coming from in the longer years of injection., stopping the bleeding and letting you exercise. You may find GPs and nurses refuse to provide your injections after the normal time frame if you get discharged from him. They completely ignore the fact this treatment is what let's you get up and about when the bleeding stops.

I spent 2 years fighting to get my injections back on track as I'm way out the usual time frame for my Depo injection, (it's only meant to be given 2 years but nothing else works and I'm on it 14 years now) only a specialist like yours can confirm your Zoladex/ prostrap can be kept going after a nurse or Dr refuses. Id request he gets you a printed letter sent to you, plus a copy put to your notes, plus a letter directing the GnrH must be extended beyond the normal license. Ask for the phrase 'approved by faculty of Sexual Health' if applicable. I know Depo is different from zoladex. But I hope you understand about the importance of getting a copy of that letter.

Hugs and my best hopes for you, you legend.

[Sunset-lady]

Thanks for this and you are exactly the kind of person he was talking about. It's the licensing isn't it? I will get a copy. Take care