Total Hysterectomy ...

[Maria07]

Hi,

I'm completely new to this and hoping someone can help...

I've just recently been told that I need a total hysterectomy, diagnosed with endometriomas (largest is 9.3cm) and also signs of adenomyosis. I'm in the slightly panicked phase now as surgery will be soon, in the next few weeks and I've started doing some more reading and research and wondering whether hysterectomy is the only option? I don't want to doubt the decision of the consultant, but other than an exploratory hysteroscopy last year, no other treatment options have been carried out or discussed.

I'm 45, no children but no plans to have one now, have made my peace with that one a while ago... Is this the right thing to do, just feeling very daunted and scared by it all and not sure where to turn to for advice right now? ....

Thanks to anyone who can spare the time to write, it's good to know there is a community here at least to turn to for support....

Best wishes to all and wishing you all well...

Maria x

[Tboag]

Hi, I had a hysterectomy for Adenomyosis, but as Lindle gas said, unless all your endo issues are dealt with at the same time, you still could have endo symtoms, you could find that if all your endo was excised first you could be pain free with out a hysterectomy,

Adenomyosis is cured by a hysterectomy, but if you gave both as I did, it's impossible to know where your symptoms come from,

I still have daily pain, now caused by the endo, but I'm better than I was before my op.

I recovered well after my hysterectomy, I was 39 and my overlies where left in, and therefore estogen is still produced with ovulation.

Will they remove your ovaries?

Are you being seen in a BSGE centre with a specialist,?

Good luck

[Maria07 in reply to Tboag]

Hi,

Thank you for your reply, it's really helpful to hear from others with experience in this. Yes, my consultant (not an Endo specialist) wants to do a total hysterectomy, removing both ovaries and uterus. Both ovaries are affected with large cysts so I don't think it's realistic option to save them?

It's reassuring to hear you recovered well after your op, it's all quite daunting and scary at the moment..... thank you so much for your reply.

Warmest wishes,

Maria

[Maria07]

Hi Lindle,

Firstly, thank you so much for your quick reply.... I've got myself in a bit of a tizz with it all, and I'm really grateful for your contact and support.

I've been having problems for about 3 years, presenting as very heavy periods with large clots, periods of unexplained sudden and frightening extreme lower pelvic pain which would come on mid month and was excruciating, something like a Chinese burn being applied to my uterus and vagina, this would then cause bouts of IBS. I had ultrasound and nothing found at the time except small fibroid in my womb. Then an exploratory hysteroscopy to establish if I was suitable for ablation treatment, which confirmed that I was suitable but at the time I decided not to proceed as my gut instinct told me it wasn't the right thing to do, and then the extreme pains I had been having stopped.

Things seemed to settle for a while, but lower back pain began to get a lot worse and then my periods became erratic, I went to my doctor again after bleeding for 3 weeks. Further ultrasound done, which found large cysts in my ovaries this time, and the radiologist also suspected adenomyosis from this scan and endometriosis. Blood tests done to establish my CA 125 , which was slightly raised (53) then referred to gynae consultant who arranged MRI scan which showed cysts and slightly enlarged uterus.

Consultant said cysts must be removed, and showed me the pictures from the scan showing a slightly enlarged uterus and the cysts, these are fused towards the back of my uterus which I'm assuming is causing my back pain. Periods are now lasting longer as is my cycle for the last few months, previously around 26 days on average when cycle was normal, but last few have been around 35 days or more between and last for about 10days or so...

When I asked the consultant why she needs to take my uterus as well she said it would complicate the surgery if left behind and considering my age would there be any point in leaving it behind to cause further complications and also that it would limit options for HRT afterwards. I'm guessing that the ovaries cannot be saved with such large cysts? It was the one question I didn't think to ask at the time - is there any alternative to hysterectomy? I guess I was still reeling from it all.

I'm so grateful for any advice or support you can offer, thank you so much for taking the time to answer me.

Warmest wishes,

Maria

[JEWELS]

My advise would be think what's right for you.. A hysterectomy may not help all your issues. But a bonus no more bleeding. Also ovaries need to be removed also.. Or the chocolate cysts will grow back.

Your consultant must be a endo specialist because they are trained to remove all visible endo.. A regular gyni consultant is not.

No one ever tell you about adhesions either that form after surgery, can cause you more pain also.

I had complete hysterectomy age 41, had a few problems after but fine now.. I have never regretted having it done.

Good luck x

[Maria07 in reply to JEWELS]

Thank you Jewels, it's so helpful to hear from others. I'm not being seen by an Endo specialist but I do feel quite confident about her. It's all happened very fast, so it's very confusing at the moment.

It's good to hear that you've never regretted your hysterectomy, and that you recovered well eventually. Did they offer you HRT afterwards and if so how did you find it?

Warmest wishes,

Maria x

[Maria07]

Hi Lindle,

I'm in Portsmouth, have not seen an Endo specialist, it's all happened very fast to be honest, so I'm very grateful for how quickly I've been seen by the consultant, I've barely had time to think about it so I think that's why I'm a bit confused too

Thanks again,

Maria

[Tracey29]

Hi Maria

It's a scary place to be isn't it. I suffered for more than 15 years with pelvic pain, heavy periods etc etc with a consultant telling me I was just one of those unlucky women who suffer heavy periods! I had other treatments (non surgical) over the years and whilst it sort of kept symptoms at bay I didn't realise how poorly I was until I had recovered from my hysterectomy. In the months before my hysterectomy I was referred to other surgeons and decided on surgical procedures to ease my symptoms but when the surgeon attempted the procedures she discovered endo, adenomyosis and cysts too big for her skills.

I had a total laparoscopic hysterectomy and bowel resection 10 months ago and recovered v quickly. I can honestly say I feel amazing now and can't believe quite how much I was suffering before.

It's a very big decision and I can only tell you my story but you will know what is right for you.

Xx