Post hysterectomy- endo and adenomyosis. Questions welcome!

[Freddie20620]

Hi.

So. My story starts like most. Painful, heavy periods but mine started when I was 13. I'm 41 now and was only 'officially' diagnosed with Endo in Feb 2020 after a lap during which they found an ovarian cyst so big it was touching my kidney. They found stage 4 endo all over the fallopian tube and around my bladder- I asked for a hysterectomy but my consultant just smiled 😠. I have 2 boys- I knew I didn't want anymore children (I know I'm lucky to have had them to start with). The lap went well and I was relatively pain free for about 5 months, I had the mirena coil fitted during surgery. Then around Xmas 2020 I started to get pain again and then the bleeding started again and didn't really stop 😔. By April I'd had enough but because of covid I'd never had my post op follow up appointment with my consultant. After advice from my gp I contacted the medical secretary and asked her if she could help me. She was amazing and to cut a long story short she managed to pass my concerns on to a different consultant gynaecologist and they arranged for me to have an MRI. That was in May and in June the consultant rang me at work to say that the endo had come back with a vengeance. It had covered my remaining ovary, my bowel was fused to my uterus and all of it was fused to my pelvic wall. She told me that I needed an emergency hysterectomy with a bowel surgeon present. I got my date for the 28th of July so I'm 2 weeks post op now. They found more stage 4 endo plus adenomyosis in my uterus. My ureter was also fused to the back of my uterus which caused them more issues than the bowel problem but I'm doing well. I just struggle because I'm not good at 'resting' and the sitting about is driving me mad. I went with my husband yesterday to do the food shop (didn't do any lifting or bending) but last night I had an awful tearing /pulling pain start in my abdomen which hasn't let up all night and is still hurting this morning so it looks like another day of rest for me. 😏

Anyway, sorry for the long post but I just wanted to tell my 'story" and say that if anyone has any questions I'm happy to answer if I can.

Bonnie x

[Nikkky]

Hi Bonnie, wishing you a speedy recovery. I had a hysterectomy 4 years ago and I would recommend just getting out for a short walk every day if you can manage it. It’ll help to build up your stamina again. Have you been put on HRT?

[Freddie20620 in reply to Nikkky]

Hi NikkkyI do try to get out everyday- in fact I get moaned at for trying to do too much. I've spoken to my gp this morning about the pain I've been having and he said it's probably been caused by doing too much too soon and could be new scar tissue pulling or even internal stitches.

I have an appointment on Wednesday to speak to a doctor about HRT but did mention it to the doctor this morning- he suggested keeping the appointment with the other doctor though as she is the expert in HRT at the practise. So I'll just have to cope with being a ball of fire until then!

[Nikkky in reply to Freddie20620]

It’s difficult to know what’s causing the pain but it could be scar tissue, as it can start to form soon after an op. I still have a sharp, throbbing, pulling pain in the area where my left ovary used to be. I was told it was probably scar tissue. Regarding the HRT- have a good look at Louise Newson’s, Menopause Doctor website. It’s excellent for up-to-date factual info & lots of podcasts. You might know this already but when you’ve had a hysterectomy they put you on Oestrogen only HRT rather than combined HRT that has Progesterone. Because Progesterone is needed to keep the uterus lining healthy, the theory is that we don’t need that hormone when we no longer have a uterus. However, as you’ve had endo and there’s always a chance that it’s not all been removed, you will need Progesterone as well as Oestrogen (so any endo doesn’t flare up). A lot of g.p’s are useless when it comes to their knowledge of HRT (hopefully you’ll have a good g.p) but make sure you are given body identical HRT. Oestrogel or Sandrena gel is recommended for the Oestrogen replacement (as it’s rubbed into the skin and is better than a tablet) and Utrogestan tablets for the body identical Progesterone. Take a look at the Balance app aswell. Hope that helps as HRT is another journey! Good luck with it all.

[Freddie20620 in reply to Nikkky]

Thanks so much for your advice. I will definitely ask the gp about it all. I do know, however that I could never take the combined pill, something to do with the type of migraines I suffer with and me being a stroke risk so I'm not sure how that will affect my choices. I will take a look at that website. Thanks so much!

[Nikkky in reply to Freddie20620]

You should be okay with body identical HRT rather than synthetic HRT. The contraceptive pill is synthetic. There’s zero risk of blood clots as well with transdermal HRT (absorbed through skin) so it’s safe. Doctors are quite often referring to old info relating to old types of HRT as they don’t have any training. Do your research on that website and it will pay off. I was put on Oestrogen only HRT and my bowel endo flared up. I then did my homework and informed my g.p of what HRT I wanted. Don’t let them put you on the combined tablet or patch either as this contains synthetic progesterone and you’re more likely to have side effects. The good thing about having separate Oestrogel and Utrogestan is you can increase or reduce the dose of each if you need to, so it’s easier to control. You’ll find everything you need to know on the website-it’s an eye opener!