Confused/ anxious about how invasive a surgery to go for...

[Gio73]

Hi all, my disease confuses me and I still don’t understand it. Can you help advise or respond with your experience?

From my last MRI in January, I have stage 4 ‘bilateral ovarian’ Endo and ‘hydrosalpinges’ with uterine adenomyosis, I have what is called a ‘bulky uterus’, my pouch of Douglas is obliterated, so there is bowel involvement too – part of my bowel is stuck to my uterus plus ovaries stuck to my other organs too.

I’m 48 and have two teenagers. I think My Endo developed since the birth of my children – well my second child who is 14 - but became symptomatic, around 7-8 years ago. I have only ever had one diagnostic laparoscopy in 2014. I had a C-section for my first child (now 17) and wonder whether this contributed to my disease?

I have always managed my pain with ibuprofen and paracetamol, which most doctors are surprised at. BUT my main problem right now is pain in my right ovary, which swings from my back to my leg and is very bad and I just want it cut out. I also leak brown blood a lot – probably due to impacted fallopian tube and ovary.

Any advice on any of the above would be good.

Should I:

Get a hysterectomy? I am considering a partial or full, but not keen on the idea of immediate menopause or taking HRT. Is it possible to have a partial hysterectomy and to keep your ovaries – what happens to hormonal function/the way I feel in this case? Has anyone had a hysterectomy – how long does it take to recover from? I know it doesn’t always work. He wants to take out my cervix too.

I’m worried that an operation will leave me with worse pain, so it’s almost a case of ‘better the devil you know’ – but this ovarian pain is affecting my life. Perhaps I should start with another laparoscopy before going in heavily?

I have a good consultant –at the Lister hospital. He has a cancellation on the 25th but i feel like it's too soon.

[TennisAM]

Is your consultant a proper endometriosis expert? That is really important and then if I were you (and you have medical insurance) I'd ask them to have a look on the 25th and determine what they can do. Once you have the reality of the situation then you can make an informed judgment.

If you have a hysterectomy it's so important that they excise every last but of endo as it can create it's own estrogen. If they leave any it could continue to grow after a full hysterectomy.

Sorry i can't comment on the hysterectomy side of things but yes a c- section is a known way of getting endo because it escapes from the uterus due to the cut.

Take care

[Gio73 in reply to TennisAM]

Hi there, thanks, so you would suggest having another diagnostic lap? I have had an MRI done which shows most of the damage...

[TennisAM in reply to Gio73]

MRIs can be notoriously unreliable depending on the skill of those who analyse the images. There's a margin of error with them. My consultant (endo specialist) said he had a patient with an mri that showed endo in 3 places. He searched extensively in those areas, no endo. He found endo in two other areas the mri didn't identify. In my mri before my last op it said there's no obvious endo. I had a fixed colon a fixed urethra and a fixed ovary. I had nearly 15mm of endo in my pouch of Douglas. Supposedly all clear.

Was just suggesting it as an option so that you don't have to jump straight into a hysterectomy. If they tell you what they saw in a diagnostic lap then you'll be fully informed to make a choice.

Best to discuss this with the consultant as they can make a better judgement if excising and removing that ovary will be enough help.

I guess the other consideration is if it returns again in the future with the same venom.

Have a think as other dates will come up thanks to going private.

[Gio73 in reply to TennisAM]

Thanks appreciate this, yes, I guess until they're inside you, it's hard to really tell - just hate the idea of repeat surgeries!

[TennisAM in reply to Gio73]

Yeah I totally understand. I'm sure you know this already, if you do go for a complete hysterectomy it's important they excise every last bit of endo from your abdomen as they now know endo can make it's own estrogen. Therefore any lesions that remain could still cause issues /pain after the hysterectomy. This is why some women still have pain after the menopause.

Hope it all goes well x

[Vickster23]

Mr Khazali did my hysterectomy and removed endo incl bowel endo in March. I felt so much better from the minute I woke up. I was up and about walking within a couple of weeks and I’ve had zero pain since. Trust him, he’s probably the best specialist you’ll get in the UK, he runs two specialist endo clinics. I promise he knows what he’s talking about. I don’t have even the slightest regret. It was one of the best things I’ve ever done.

[Gio73]

thanks so much, yes he seems great, for me, it's just how far to go....