Private hysterectomy

[Hannah27]

My last lap in November only showed 3 small areas of endo but my uterus was bulky from adenomyosis. I'm having a period at the moment that's excruciating, I had the coil fitted during surgery but removed it after 2 months as it severely affected my mental health. I can't live like this for another year waiting for surgery. My follow up appointment isn't booked yet but won't be until may. Im thinking of going private for a hysterectomy. I swear you wouldn't let a dog live like this. You'd put an animal down. I'm crying in pain and not sure what to do. Has anyone opted for private healthcare??

[AllthatGlitters]

Hello yes I had a private laparoscopy which was my first initial surgery for my adenomyosis and endometriosis. This was to diagnose my endometriosis. I knew I had adenomyosis already as I had an MRI. I know all about the pain from it, on all fours, crying in pain for hours, since diagnosis aged 35 it’s pretty much ruined my life. 8 years on, 3 surgeries I am now thinking of a hysterectomy.

You can have a consultation privately, mine was around £200 to speak to a gynaecologist of my choice. You can then decide if you want to go ahead privately or go back on NHS waiting list.

May I ask how you are mentally preparing for a hysterectomy? I don’t have children, I have always been of the opinion I want to keep my uterus. I was told 8 years ago I would need one, just lately I was told again that I will have to have a hysterectomy before I hit 50.

X

[Hannah27 in reply to AllthatGlitters]

My consultant works privately so I already have a doctor picked out which is good. I've emailed my specialist nurse so will see what she suggests. Initially my post op follows up was 3 months then 6 and now I'm being told 7 months... Then it'll be ages after that before an op. So trying to speed things along as much as possible. I didn't realise until this evening you could then go back to NHS if you wanted to which is good to know.

Not sure really about mentally preparing... My family is complete. For my lap we had friends help with school drop offs and I did loads of batch cooking to make dinners easier. This time I'll arrange cleaners I think. But emotionally I'm not sure. I'm rubbish at sitting around not being active. I have 10lbs to lose as well since gaining after my last surgery. I miss running so much.

I was told many years ago I'd need a hysterectomy eventually, I just assumed it would be when I was in my 40s... I'm 37 this year. Sorry to hear you've had the terrible pain too. It's such a vile vile illness!! Thank you so much for replying. How are you feeling at the moment? Xx

[Bumblebee11]

Hey lovely, so I am not going privately.. but for what its worth i am waiting for my hysterectomy and excision surgery. And I was referred June 2024 and was told 12 weeks. I called my doctors secretary asking for any tiny smidge of info she can give me as basically my work security is in question atm due to my cyclical time off for endo... she has said I'm scheduled for October. So it's gone from 12 weeks under an urgent referral to 16 months... :)If I could afford private, 100% I would do it. It's just not in budget for me as I was lucky enough to have children. For clarity I'm 32 x

[Hannah27 in reply to Bumblebee11]

Oh that's such a long time!! I hope you're ok? It's horrible how long we have to wait!! Im a mum too, I have some savings but will need a loan to cover it if I do go private. 12 weeks turning into over a year is awful, I'm so sorry you're having to wait so long! This makes me nervous but I know it's what's more realistic in terms of waiting times. Hopefully October will be here before you know it x

[Bumblebee11 in reply to Hannah27]

That's very kind. I know you understand- the more time that passes, flare ups/struggles are becoming more frequent. Is it like that for you too? I hope whatever you decide to do, you are blessed enough to be seen ASAP!! 🥰

[1Poppy1234]

I was told by the waiting list line to ask my Dr to push my case I did, I got a cancellation the day before my birthday I had everything removed I was 51 but four months on I'm struggling again.

[BloomingMarvellous]

Private got me answers and gave me the gift of living back. Waiting can cause so much pain so if you can afford proper care then I wouldn't put life on hold.

Prep was key for me , like you weight had become an unwelcome part of the lessening activity. I found a good Mediterranean diet before hand so helpful. Again guidance to lean into from the likes of Zoe which aid blood sugar management which seems to reduce the actual fuelling of the endo lesions too helped me grasp the nettle - at the time there wasn't the whole programme they do now so if you can throw some love that way or even work on the basics via the freebie info. I really got a lot of help from Katie Edmonds - Heal Endo book in understanding the disease as well as working out tips that felt relevant to my version of Endo. Everyone is different.

I discovered via my GP the necessity of dealing with the consequences of long term Endo pain triggering Neuroplastic pain. This came post surgery. Just because the fire is out doesn't mean the pain pathways turn off their alarm system and the pain can keep ongoing. Pain in the arse frankly. Using centralised pain meds like nortriptyline can be way more effective than opioid based meds that don't work on nerve pathways in same way & which can be highly problematic for the gut long term ( more constipation folks...) Paracetamol long term use reduces omega 3 levels which in turn fuels more inflammation. Low Omega 3 is an issue in many women with endo in the first place and considered an aggravating factor in the development of gynaecological and endo type disorders . My GP put me onto Curable App and for pain relief I've got a ton of benefit from it. Combined approaches have been a better deal for me pre and post surgery.

Lastly pre work on the pelvic floor and core with a physio who fully understands and works in the field of endo and pelvic surgery was very helpful for me to get stronger before and recover better. I've carried on after to reduce the after effects of hysterectomy and pain as inflammation across the pelvic floor is such a problem in post operative issue's and a leftover problem for many women. I like to think of my support system as like a three legged stool without each other the thing simply falls over ; Chemical (diet, meds, supplements, fluid) Structure; physical activity and postural function, Spiritual; emotional matters, core creativity, social support system.