6wks post surgery..Been advised to have a hysterectomy..please help!

[SunflowerGarden]

Hello ladies

I’m 6wks post laparoscopy for bilateral ovarian cyst removal. I had had awful pain/spotting/bloating for months and a scan showed a large cyst on each ovary. The after effects of surgery were pretty painful (it felt like my ovaries had been hacked to bits). I’ve had a Fallopian tube removal last year and they confirmed Endo. Me and hubby have been trying for a baby for a few years but it’s just not happening- I’ve got low ovarian reserve so IVF wouldn’t really help. We are very slowly coming to terms with our infertility and it sounds defeatist but I don’t want to doggedly pursue fertility treatments. I would much rather focus on getting rid of the constant pain I’ve suffered for months.

I went for my post op follow up yesterday and my consultant explained that during surgery he found that my uterus was ‘bulky’. I’m still extremely sore and he thinks that my uterus is causing my lower back pain/thigh pain. He thinks it’s Adenomyosis and said that IF I did fall pregnant than I’m very likely to miscarry. So basically I’ve gone through a painful surgery to remove cysts (I went private and it cost me over £8000!?) and I’ve still got pain. He recommends a hysterectomy. My husband is seething and wants to know why the consultant didn’t remove my uterus there and then (I stipulated to my surgeon before surgery to take ANYTHING out that was causing my pain). So now I feel crushed, I’ve spent all day in pain and crying. I’m 35 and hate the thought of MORE surgery...I just feel so so so sad. No babies. More pain. More surgery. And it’ll cost us another 10k...

I’m so sorry to sit on my pity pot ladies as I know that other ladies have much worse experiences..I’m desperately trying to be positive but me and hubby are both falling apart today. What are your thoughts? I was thinking about seeing another gynaecologist for a second opinion or simply going to see my GP and going down the NHS route. I just feel so smashed emotionally..my periods are every 15 days and they are brutal. I’d desperately love to hear anyone’s experiences...what is the treatment for Adenomyosis? Should I just have a hysterectomy? I can’t have the coil as my insides are too damaged/scarred.

[weekari]

Oh you poor thing. You've really been through it! I can't offer any practical health advice because I'm much further back in my journey having only just been diagnosed. I was also told I had a bulky uterus (sounds like such an insult doesn't it?!!) and have really had hip /back pain but no one has ever connected this before.

Do you feel you can wait a bit longer? Maybe try some alternative treatments while you are waiting (acupuncture, physio, reflexology etc) to help you cope? If so, then I think going back to the NHS but to a specialist endo centre, you'll certainly qualify for that. I think getting a second opinion would be sensible before doing anything so drastic. I know you're likely desperate to just feel better but if you can tolerate waiting a bit, I think it might help you make a more informed decision.

I also think that you're going through a period of loss, you're grieving and I think trying to make a decision just now is really, really difficult. If you feel you can wait a bit, then it might be helpful in some ways. I think if you can give your emotional wellbeing a bit of focus just now, that would be great. You don't need to 'be positive' you're having a really rubbish time and you're allowed to feel everything you feel. I imagine you're probably feeling a lot of things - anger, sad, scared... It's really important to let all that out.

Your poor head must be spinning with it all.

Look after yourself. X

[Sludge78]

Sorry to hear all you’ve been through. I’m currently 8wks post hysterectomy following an attempt 2yrs ago to solve my endo. We are lucky that we have our daughter and kinda knew after 12yrs of trying we weren’t going to fall pregnant again, I turned 40 just after my op so felt it was the right decision at the time as didn’t want to have another painful op in another 2yrs and keep putting myself through it when no babies going to come as a result. Was still a very hard decision to take though with a lot of tears. Post op I feel great and wish I had done it 10yrs ago but does sadden me when I see a babies, always adoption though.

[NAJB]

Hi,

I’m so sorry to hear about all the pain you have been experiencing. I’m not convinced that having a hysterectomy is the best option as if you have endo it can still come back even if the womb is removed. I would consider getting a second opinion. Also I have been following Maria Rafferty - the Hormone Heath Coahc online - you can find her on google and she recommended as number of alternative methods to help with pain. I don’t know if you’ll find it helpful but it might be worth getting in touch with her.

[luthien]

Ahh sorry to hear all you've gone through

I can't say I understand how you feel but it must be awful *hugs*

Lots of good advice from other ladies.

I can help with the explanation of why they didn't remove the uterus at the same time with the previous surgery ... in terms of fees and consent any other op cannot go with a hysterectomy / change in fertility unless first agreed / approved and signed for as they're technically classed as two different operations - another example; the fee list wont do caesarean and removal of endo and stuff like that together in the same fee bracket - it's frustrating how it works. That said they can put two ops fees together and just do it as one op - it needs to be signed for before though and the fee clearly mentioned to you - new rules on clarity. I know that info doesn't help now, as you're still in pain and suffering and just want some relief.

I think you should get a second opinion just because it's a big step and if you're still not sure then a second specialist looking over your notes and talking to you may help you decide.

Be kind to yourself and give yourself time to come to terms with stuff that's happening xx