Getting the wobbles!

[ccsmith]

I’ve been in pain for so many years and I’m due to have a full hysterectomy & bowel resection next month. I’m starting to feel the pressure of everything being “ok” after! My husband keeps saying I’m going to be cured or life will be easier after. I’m going for a job interview tomorrow as he’s keen I will be working again by winter. I know there’s no answers or crystal ball but I’m feeling really overwhelmed by it. He doesn’t mean it and he’s been incredibly supportive but I think he believes I will be cured!! Sorry it’s a daft post but if anyone gets it it’s you guys 💕

[Hidden]

Hmmm, that is a tough one!

I really, really hope you will be fine after. Your symptoms will be much, much better when they clean the endo for sure. You may even tolerate hormone therapy, which would be brilliant.

However, and I know it is really, really nasty to say this, there is currently no cure for endometriosis. As a friend of mine once said "if endometriosis was a mens disease, they would have find a cure by now, unfortunately it is womens". There is a treatment for elevating the symptoms, which works for a lot of women. There are also other things you can do to feel better - proper diet, elimination of hormone polution in your home and so on, you can read a bit more about it.

I always say to myself - expect the worst hope for the best. I thought my first lap would be the only surgery I need for the rest of my life, unfortunately at the moment I am waiting for a second one. But that is me, everybody is different.

I will say it again - you may be absolutely fine after and with the right changes to your life style, forget about pain. I sincerely wish this for you. I sincerely wish this to all women in the world battling this terrible disease! The reality however is that you need to leave a space at the back of your head, for the fact you may need further surgeries or that the pain reliave will not be fast and complete.

My husband also thought the same even after I explained time and time again that it may not work out for me in the long term. Of course our husbands would be blind in their hopes! They love us and do not want us to suffer, it is understandable. I personally cheered with him and agreed to his optimisim, but of course at the same time was realistic with myself. I know it is overwhelming when someone is puting so much trust in a medical treatment. But I bet it is very hard for him.

Cheer up! Chin high, think positive.

I'm with you!

xx

[Hidden]

Firstly, all the very best for the surgery. Look after yourself before, during and after, and make sure you really fully rest and take time with your recovery. As others have said, and I’m sure you know yourself, sadly you can’t assume the hysterectomy will get rid of all your symptoms and be the long term solution we all hope for. But its often the best chance of a better quality of life. Myself, I went in for a planned full hysterectomy but due to more complications than expected with my adhesions etc they couldn’t do what was planned. I ended up with ovaries and tubes removed which should have hopefully given the same results. However, after a few months I started bleeding again in a cycle. It seems that some tiny ovarian tissue was left behind as things were such a mess. So my op was not quite the final hoorah I’d hoped for. The pain was far less but there were concerns if I was still bleeding the Endo was still active and could continue to spread. So I am now on double dose cerazette. It took a few months to settle but I can honestly say for the first time in my life (in my mid 40s) I am pain free. I feel the best I have ever felt physically. And I do think that’s the result of both the surgery and trying a new drug on top. I am glad I had my op, even though it didn’t quite go to plan. I felt I was taking some control of my disease, but I’m glad I went into it with my eyes open not expecting a guaranteed ‘cure’ as that’s not what I got. Plus, your husband needs to be aware that even if the hysterectomy is a complete success for the Endo, things may still be quite different for you as you experience menopause quickly. For me, I had immediate night sweats, memory fog, and vaginal dryness. Obviously those symptoms have changed as I’m back on hormone drugs! I suppose the main thing to acknowledge is that until your surgeons go in, they won’t know exactly what they can do. And until you’re recovering you won’t know how it’s effecting you. We’re all different. And our Endo effects us differently. I’d just say stay positive, informed, hope for the best outcome possible but be prepared if things are not quite as rosy as you’d hope. It still worked out very well for me despite not going to plan. Just let your husband know how his expectations are making you feel. As you’ll want to be able to be really honest with him throughout this. It’s a lot to deal with. But I’ll keep my fingers crossed that it works out well and your quality of life improves on the other side. Just like mine did in the end! Take care x

[ccsmith in reply to Hidden]

Thank you so much. I’ve got so many things that I have no control of at the moment and I’m feeling a little overwhelmed.

I had a good chat with him this am and he seemed to understand how this won’t be curative but 🤞🏻 make life more manageable.

I’m sorry things didn’t go great for you. It sounds like your managing well on the meds and I hope it continues for you.

Thank you for sharing your story and it’s always good to hear good, bad and stories that don’t go as well as planned.