Hi ladies. I’ve been really ill with my endo and adenomyosis and have run out of treatment options. I’m at the point of wanting a hysterectomy but wanted to ask those of you who have had one for advice.
I’m currently under Mr Christian Barnick at the Homerton but I’ve also been referred to Professor Janice Rymer at Guy’s for a second opinion.
Does anyone have any personal experience of either of these consultants?
Thanks in advance xxx
Hi Claire,
I haven't been through what you are asking but read your comment and just wanted to say I hope you find the answers you need. Stay strong sister x
What a lovely comment. Thank you so much darling, sending love to you too xxxx
Hi there,
I will be seeing Prof Janice Rymer later this week also for a second opinion re diagnosis so I will let you know how it goes! Have you seen her before or are you awaiting a first appointment?
Thank you yes please keep me posted! No I haven’t seen her before but I work at the hospital and colleagues have told me good things about her so I asked my GP to refer me. Good luck xxx
Hi Claire. I went in for a full hysterectomy in 2016 (aged 41) with my consultant in Hertfordshire but sadly it didn’t quite go to plan. Unfortunately my endo was even more complex than expected and it was too risky to remove my womb. They attempted to remove my ovaries and tubes (and done other bits while they were in there). I recovered well from the actual op and was hopeful of a new quality of life despite them not being able to to the full thing. However, I continue to have bleeding. Somehow some ovarian tissue has bend left behind and it is enough to stimulate the cycle. So but if a disaster! But I do t regret having the op. I’m glad I tried. It was my last resort to try to really improve things but I went in with open eyes knowing there were no guarantees. I think so long as you trust your consultant and have done all your own homework just try to be positive. The Hysterectony Association is a really good website for info and case studies and they do a great little book on tips for a happy hysterectomy. A good useful and funny read for before and after the op. Best of luck xx
Sorry I don’t as I’m from Manchester but my consultant Dr Ahmed was fantastic, she was very understanding! I’m 5 weeks post op today! Been back in work 2 weeks, driving for 3! All the pain has gone! Amazing I’m so pleased! Good luck! 😊
Best wishes Claire I’m in the same situation and at 41 I’ve reached the point of begging them to take it all out. I’m terrified it won’t work as I feel I’ve tried everything. I’ve been through 3 consultants and they’ve all come to the same conclusion.
Good luck xx
Not quite at the hysterectomy stage yet 🤞 but I’ve got stage 4 endo. I’m being treated by Mr Barnick at Homerton too and have found him to be really good. Much better than my previous experience at Barts. Four weeks after my second lap now (first with him) still feeling pretty rotten but v happy with how he’s engaging with me. Had an appointment today with the endo nurse but Mr Barnick made time to see me as I had a few questions; he put my mind at rest after worrying about post of pain and gonapeptyl side effects. Hope you have similarly good experience.x
Hi Claire, how are you getting on? I was just wondering if you continued with Dr Barnick or went over to Guys? I had my 3rd lap 6 months ago and was really happy with Dr Barnick, but the after care wasn't great. I struggled to get through to any one and was really worried about the pain which lasted a good 2 months. The op was a success but ive recently started to get pain again so being referred back for scans. I heard Barnick is top of the game but also want to make sure i get the best care. Hope all is well your end xx
Good morning! I’m so sorry you’re feeling so rubbish so soon after surgery. This disease is such a ****!
Yes I did stay with Mr B in the end. My referral to Guys took so long and I was offered a cancellation for the surgery and couldn’t wait to get it over with. I have to say I have nothing but great things to say about him - and probably embarrassed myself with my gushing gratitude at my discharge appointment!
Like you, I did sometimes struggle between appointments so I called and also emailed the nurse at the clinic - have you tried that? Also it’s always worth calling (and calling and calling) to get an earlier appointment if you need it. Again you might get a cancellation.
At appointments at the clinic sometimes they give you the first doctor who is free but if you’re not happy to do that you can insist on waiting for Mr Barnick. I once waited two hours after my appointment time to see him but for me it was worth it for the continuity of care.
Also if you’re not happy with the care, please do feedback to the hospital. He actually asked me to do that once about the waiting times because he has such a small team and soooooo many patients so if we all keep saying it, maybe the hospital will do something
Let me know how it goes xx
Thanks so much for replying! I'm new to these forums but must say it's so encouraging to connect with my fellow endo sisters :-). Yeah I was the same in recovery, I think I held his hand a bit too long loool. I tried chasing the nurses by phone and his secretary but in the end had to go through PALS just to get a call back. I really trust the endo team there though, all the doctors I've seen have been so knowledgeable or honest about their limitations so I think I'll stick with them. How did your op go and how arw you feeling post op? Xx
It is lovely getting advice from people who understand isn’t it?
So sorry it took so long for you to get a response - hopefully that’s a one off.
I had my hysterectomy in September which wasn’t an easy decision but being in so much pain basically all the time was having such a huge impact on me and my family that it was a no brainer. Physically the change has been amazing. Literally when I was coming round from the surgery I could feel the difference. Even with the post surgery pain, I knew that the bad stuff was gone! It took a while to recover but it feels amazing to not be in pain anymore and to be able to just live my life 🥰
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