I have a huge Ovarian cyst that takes up the whole of my abdomen and makes me look about 6 months pregnant. I have had CA125 blood test which came back normal and the gynaecologist thinks it it is benign although until it is removed and pathology test it, she can’t say 100% that it isn’t cancerous.
She told me today that I will need to have a complete hysterectomy (i’m 41) taking everything out!!!
I’m not keen on being thrown into menopause so quickly and to be honest, I’m really concerned how the surgery and recovery will affect my MS. I currently take LDN only and have for the past 6 years and doing really well on it, but in order to have strong painkillers post op I am going to have to stop the LDN and I’m petrified that I will end up having a big relapse without anything to control my MS, the stress of the op and the long recovery time.
In 2007 I had an op and within a week I had a nasty relapse within a week, which has left me a part time wheelchair user which is why i’m so scared.
Are there any ladies that can tell me their experience of hysterectomy, recovery and if it affected your MS or how I can manage it to minimise any relapses while i’m not taking the LDN?
Hi T , I’m so sorry you’re having all this to add to your ms.
I can’t tell you how it could affect your ms, but I’m sure there will be others not far behind me, who will be able to offer good advice.
But I can offer my support, advice and concern hun.
The most important thing here, is to have that cyst removed asap…just to ensure it is benign. You have to do that.
I had a hysterectomy when I was just 31, due to pre-cancerous cells shown on a regular smear test. It did take a good while to recover from. But I already had my children luckily. How has that worked out for you?
If you and your neuro and ms nurse know what 's going on, hopefully they will be able to be ready I case of a relapse.
I had a total hysterectomy at the age of 27 because of cysts and other issues. I am 65 now. I recovered fast but then i was young and i didnt have MS.
In those days there was no HRT well there was it had just started and my gynea actually told me she didnt want me on it, as there were reports that breast cancer had increased after using it. (This is back in the seventies). She also told me, that hormones will be created by other glands in my body so all i could do really was trust her judgement.
I went into surgical menopause within months. Yes it was a bit iffy for a bit, but i got used to it. Since that time just out of interest i had blood tests for hormone levels and they have always been NORMAL.
I think for me it was the best thing ever happened as i was so ill with all the stuff going on.
I do know other people who have MS and had the hysterectomy and have recovered well.
Whatever you decide good luck. It was the best thing I ever did, although sadly it stopped me having more children, but i have never regretted going through it. x
A few years ago I was diagnosed with fibroids and a hysterectomy was a possible treatment. Fortunately it didn’t come to that, but I didn’t even think about the possible impact of the operation on my MS.
I agree with the others, though. Benign or not, that lump has to go. Speak to your neuro about the likely effect of the operation on your MS. Good luck, hiwhatever you do.
I seem to recall that there is a greater likelihood of an MS relapse following a general anaesthetic. I certainly had a series of relapses after a general 6 years ago. That wasn’t for a total hysterectomy, just removal of one ovary and Fallopian tube, so I can’t help with the post hysterectomy issues. (And I wasn’t on any DMDs at the time!)
Is there any DMD you could be taking whilst you’re not able to take LDN, i.e. one that could be taken together with pain killers? I’m thinking about maybe something that doesn’t have bad side effects, like Copaxone. How would you feel about taking a DMD for a while in an attempt to ward off relapses? Maybe it could be something you could bring up with your neurologist and / or gynaecologist?
I do wish you the best of luck with it. It’s certainly not a pleasant thought, having a hysterectomy is bad enough, but to have the worry about a potential MS relapse as well is dire.
I am 46 and was diagnosed with m.s 8 years ago and have only ever taken ldn. I stopped ldn in July when I was diagnosed with breast cancer as my head was all over the place and I did not want to be taking anything that was not prescribed by my gp. Daft I know but I thought what if this will not help this new fight I have on my hands.
It was, in my mind a very scary decision as I suffered my first ever relapse 3 weeks later as I was just getting ready for the breast cancer op.
Please know I have nothing to prove that not taking the ldn caused the relapse and it could have been all the worry/stress over the cancer but it is something that terrified me.
I have since had radiotherapy for a month, I was very fortunate not to need chemo.
I had my annual neurologist appointment on Monday when he asked me about ldn and when I told him he seemed a bit surprised. He said the only dmd they could offer me now as I am on tablets for ten years to keep the cancer at bay is copaxone.
I meet my oncologist on Wed 30th and will ask all about ldn and hopefully will resume it again.
I know it was a long winded response to you but I really think ldn has been great for me and I also think there may be other stronger painkillers that would be safe with ldn.
I’ve had general anaesthetic twice since being diagnosed with MS. I had no subsequent problems. Admittedly the operations weren’t as major as a hysterectomy, but you might be all right.