Hysterectomy

[PinataHeeHaw]

Hello.

I have been having heavy bleeding with clots for months on end for the best part of 20 years now. Pain too. Excruciating pain. I've been diagnosed with endometriosis, adenomyosis and most recently pcos. I've also had polyps and fibroids. I've had hysteroscopies and biopsies. I've been prescribed tranexamic acid, norethisterone, mefanamic acid, the depo injection and the mirena coil, which made the bleeding worse and I expelled it. I've had numerous blood transfusions and iron infusions. At the moment I'm fighting for an iron infusion but the lack of joint up care in the NHS means I'm getting nowhere.

I'm absolutely broken. My mental health is shot at. I'm wondering how long I can go on working for living with this condition

I've spoken about a hysterectomy before briefly to the gynaecologist who has always wanted to try other things. They're a great advocate of the mirena coil. Nothing has worked. My weight has also been mentioned previously as a caution to getting a hysterectomy. I'm 24 stone and had fibroid removal surgery last year and a hysterectomy and biopsy at the same time and recovered brilliantly.

I'm at the absolute end of my tether. If you have experience of this, I'd be so grateful if you could tell me how willing your gynaecologist was to work with you in getting you a hysterectomy.

Thank you.

Would having the operation privately be an option? I had a similar list of conditions and symptoms and was messed around endlessly by the NHS. I saw a private consultant and she booked me in straight away for a hysterectomy - two weeks later it was done. I am lucky to have health insurance through work - this was 10 years ago and the cost was about £7k.

NHS waiting time for hysterectomy is between 2-4 years in most places now.

Cost is up to £15k private.

Don't know if these issues are useful, but just for context!

I think you’ve got an error or typo - you want advice on getting a hysterectomy, but you said had fibroid removal surgery last year and a hysterectomy and biopsy at the same time and recovered brilliantly.

Ah sorry I meant an hysteroscopy.

I scared that I pay for the consultation privately and they refuse me the hysterectomy.

Is a hysterectomy guaranteed to stop bleeding?

The initial consultation will be relatively inexpensive (compared to cost of procedure) - there's never going to be a guarantee that they will agree to a hysterectomy.

May I ask how old you are and whether you have children, as those are factors they consider? They are less ready to agree if they think you might want to have children down the line. I don't have children but was in my early 40s so they were happy to accept I didn't want them by that stage.

Once your womb is gone, it can't bleed any more. You will get some post-operative vaginal bleeding from the wound until it heals - that lasted a few weeks for me, not heavy bleeding, just a trickle - but once it has healed, that's it.

@SwanOfThoseThings thank you.

I'm 40 with no children. I wanted children but they didn't happen. I'm OK with that now.

How many consultations did you have, and did you have any issues convincing the consultant that was the best course of action?

Just one consultation with the private consultant, which lasted about an hour. She viewed my records which showed endometriosis, adenomyosis, fibroids and ovarian cysts and I explained that I was suffering continued debilitating pain and heavy bleeding; and she put me on her list for the next available slot for her to do the operation. After years of being messed around by the NHS and having months-long waits for appointments, it was incredibly straightforward.

A hysterectomy privately with excision surgery for the rest of my endometriosis was life changing for me. It took a while to recover but I can’t believe how small my life had become with the pain and exhaustion. It’s not cheap but if it’s at all a possibility for you then please look into it. My surgeon was very skilled and I’ve since made a full recovery. Do NOT go under a general gynae even if they have an “interest” in endo, you need a specialist ideally in a BSGE centre. Other costs will be an MRI to see the extent of the disease pre surgery. This will help your surgeon decide whether to have the colorectal team and urologists involved. If on NHS and in BSGE centre they would be on hand as standard but if you are paying privately this would push costs up so if you don’t need them that’s cheaper.

Thank you both so much. I have an appointment with my GP who I know will just tell me to speak to my gynaecology consultant when I'm due to see him in June. I can't wait that long.

I am now thinking of going private but my BMI is over 50 and I'm scared it will put even the private consultants off from operating. I can afford the £250 initial consultation and then the cost of the operation will have to be on finance. I'm tempted to book that initial appointment. I feel this could be life changing.

I can't imagine not having to worry about leakage. Being able to have a relationship and not leak on their beds after sex. That's of the bleeding stops! Being able to sleep a whole night without blood or pain. I can go swimming! I can eat things and drink things without worrying about a series of blood clots and a whole lot of pain.

Maybe ask your GP about the likely impact of your BMI? I was overweight when I had mine, BMI in the 30s, and it wasn't mentioned as a factor but obviously it might be different for a BMI in the 50s. I will say my recovery might have been easier if I'd had a lower BMI - mine was an abdominal operation meaning a horizontal cut above my pelvis - while it was healing I had to rely on my upper body to move between lying/sitting and standing. If you can have a keyhole op that might not be such an issue. I had to have my ovaries cut away from where they were fused to my bowel, so keyhole wasn't an option.

Im in the greater manchester area. Does anyone have any recommendations for gynaecologists please who can do the surgery?

Thank you. I hope they will operate.

If you are on Facebook try this group - very knowledgeable admins can help you find the right care and there is lots of useful info - https://www.facebook.com/share/g/18WTHg5WJx/?mibextid=wwXIfr

Thank you very much.

My mother is trying to put me off having it done privately because of the cost. She thinks the NHS will magically agree to do a hysterectomy and quickly even though I've been back and forth for 20 years asking them to stop the pain and bleeding.