Needing some help. Terrified at the prospect of fibroid surgery (full hysterectomy)

Hi Ladies

I am feeling really overwhelmed just now and hoped posting here will help. I've got such a long, convoluted story, I will try keep it brief.

I've been unwell for 4.5 years- it's mostly been fatigue, which is very debilitating. I initially had severe abdominal pain and bloating but now it's not as bad- I swell up huge before my period and have lots of pains but it's bearable. I have severe lower back pain, it's constant and really difficult to manage, it hurts to sit, stand or lie for longer than 20 minutes, so sleep is difficult. My periods are light and not too much trouble at all. They became shorter and lighter at the same time this all started.

I've been referred everywhere over this time (gastro, gynae twice, orthopaedics). I had an ultrasound nearly 3 years ago that found 2 fibroids growing out of my uterus. I was told by gynae that they were asymptomatic. Enndometriosis was queried and I had a lap 2.5 years ago- nothing was found- just the fibroids- one of which had grown since the ultrasound- from 5cm to 7cm in my pouch of douglas. I had been put on a contraceptive pill in the run up to the lap which helped my symtoms so I was discharged, being told that I had had a hormone imbalance that the pill had resolved. I stopped the pill and the abdominal symtoms didn't return but my fatigue did gradually and I also started to gradually have lower back and hip pain.

I eventually saw orthopaedics earlier this year and had an MRI- following which I was told I had severe endometriosis and was referred back to gynae. The endo specialist service were consulted and they requested another MRI, I was told I had a cyst growing off my ovary and they sent me for a CT scan. I was then told it wasn't a cyst, it was the fibroid (the same one from before- pedunculated) that was now 13 cm in size, which they described as a 'bizarre, complex mass'. They said half of it was a fibroid but a large part was blood filled and there was some that they were unsure of. The endo service said this did not appear to be endo so referred me back to general gynae who were very vague with me and didn't offer me much of an explanation, they told me to go on zoladex for 6 months to shrink it but there was no plan for after the 6 months. They said surgery was not an option. I was reluctant to try zoladex, so I requested more info by meeting with the endo consultant- they said no initially but requested my medical notes and saw how much they hadn't told me and so I wrote a big letter detailing it all and I've got an appointment with the endo specialist consultant in a few weeks. He's wrote to me to say that they are unsure what is going on but that he thinks exploratory surgery and biopsy will be at least required and that a surgical approach will likely result in me losing one or both ovaries and possibly also hysterecctomy. He said in the letter he is concerned about the pathology of the mass and wants a biopsy and CA125 taken (I'm getting that on Thurs) so there's obviously a bit of concern about cancer.

I'm 40 and don't have children. I am unsure if I want kids. I've been so ill, for such a long time, I just don't know what I want. My priority now is to have a meaningful life- at the moment I don't have this. But I am worried that if I got a hysterectomy and then felt better, I will long for a child and regret this. But it seems that a hysterectomy is likely going to give me the best chance of recovery. It just feels so drastic to have a part of my body removed- especially what I feel is something very 'female'.

I am wondering if there are other options that I don't know about. I've thought for a while that I had severe endo so was doing a lot of natural approaches for that (gluten, sugar, soy, alcohol, caffeine free diet, bio identical progesterone cream, DIM, serrapaptase) but this has not benefited me at all, if anything I am now worse.

I recently started CBD oil which does seem to be improving my sleep a little.

I am very reluctant to take synthetic hormones or use painkillers regularly.

I would love to hear from anyone who has had any similar experiences- of fibroids and of this type of surgery.

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