Hysterectomy in a few months, so scared that I'm talking myself out of it - can anyone offer advice?

[Redsparkleydeeleyboppers]

I don't know what to do to get myself through it.

I know people go through much much worse and some women have no choice but to have the surgery but after being on a waiting list for 14 months I had shelved the worry but since my pre-op last week I've been in such a state mad have made myself feel like a bag of crap.

I suffer from anxiety in general and have bad health anxiety and hospital fears. I'm thinking of all the worst case scenarios which has absolutely NOT been helped by someone on our local towns FB group today asking about waiting times for a hysterectomy at our hospital and someone replying that they wish they'd never had the op at our hospital as they have since suffered ongoing issues which they described as being 'traumatic and catastrophic' which frankly has scared the fuck out of me.

I don't necessarily need the op but having suffered from gynae issues for decades and discovering that I have adenomyosis following a failed uterine ablation 4 years ago with dreadful pain at each period (53 but STILL having a cycle) and possible endometriosis my endo specialist has suggested having everything removed (uterus, ovaries, cervix) etc. This obviously reduces any uterine cancer risk because the ablation means if I were to be unlucky to get uterine cancer I wouldn't bleed post menopause so it could go undetected for a while so having it all out now would be a positive and reduce that risk but my fear of surgery, going under a GA, worrying about possible infections such as sepsis, potential blood clots and just coping with the pain and recovery has sent my fragile mental health on a downward spiral.

I do have a telephone appointment with my gynae tomorrow to discuss my worries but he has zero bedside manners and I can't imagine him having much empathy for me.

I'm not due the surgery until end of September/beg October which gives me time to either talk myself out of it or find some kind of therapy or something to be able to think rationally. I'm ND and don't always think clearly and my mind always thinks the absolute worst, always.

Has anyone had this surgery and if you were terrified like me how did you get through it?

Yep, that will be me lol!

Good to hear you have no regrets despite the complications.

Hello @Redsparkleydeeleyboppers

i would recommend seeing a therapist that also does hypnotherapy, such as a clinical psychologist or a counsellor. Hypnotherapy can really help with health anxiety and specific phobias.

This is one of the reasons that I probably need the op. I have a history of uterine thickening and now that I have had an ablation (which my previous gynae should have never put my forward for) I am very concerned that if I were to develop any abnormalities I wouldn’t bleed which is obviously one of the first symptoms for post menopausal women so that does concern me quite a bit.

Will they not offer you the op?

Yes, rest is key and lift nothing. I found week 5 the trickiest as by that time you start to think you should do more but actually not good. There is a fb page called hysterectomy sisters which was useful. For the medical surgeons it is a very common opsurgery so they sometimes don’t quite get that to the person it is a Big Thing because to them it is a very usual, dull day at the office.

Thank you, I think that I need to look into this.

I’ve been beside myself all night. A woman on my local fb group has been telling people to seriously reconsider the op as she has had so many issues post hysterectomy and wishes she had never been through it (and says she will never have an operation at our hospital again), as the issues are now catastrophic and traumatic, she won’t elaborate as she doesn’t want to out herself but she has terrified me.

Yes, this is the issue I’m having with my gynae, to him it’s all part and parcel of a normal weeks work but for me………well, I’m petrified.

Hi, they won’t offer me the op as I don’t have womb thickening (last scan 2021) or symptoms. But bleeding can be a symptom of uterine cancer and if you don’t have a uterus you can’t get cancer of the uterus.

These stories are rare, but I can understand why it’s panicked you. Hopefully others’ experiences here are more reassuring.

Thank you everyone.

Can I ask those who's recovery was tougher. Did you have a laparoscopic or full abdominal hysterectomy?

Leave that group, all it will do is reinforce your anxiety, not help it.

Please bear in mind that most women who post about their experiences online e.g. on hystersisters, have had less good experiences. Those for whom it was fine, like me, tend not to go online and discuss their experience.
I was in no pain at all after the first night, and that was mainly due to the drain etc. Just need to take it easy afterwards. I had extensive laporostic surgery due to endometriosis.

Thank you everyone for your kind replies.

I'm sure I would feel more confident if I had a more sympathetic/understanding consultant, I've just had a telephone consultation with him and as usual I find the conversations frustrating and I end up coming off the phone in tears. I explained to him my huge fears of the surgery and my mental health is in tatters but he just appeared to ignore that and kept asking me over and again did I want the surgery or not because he needed to let the waiting list people know. I kept saying that I will go ahead but I'm terrified, however he just ignored me.

I had sent him a list of questions but he didn't even have the list during our conversation and every question I asked him he just replied that he couldn't guarantee anything which I appreciate but at the same time there seemed to be zero acknowledgement from him regarding my absolute terror for surgery and the fear of complications during and post surgery - I mainly fearful due to the fact I had a uterine ablation 4 years ago which was supposed to be a good alternative to a hysterectomy, the gynae at the time (different gynae, same hospital) assured me all would be fine and complications were unlikely yet I was one of the small percentage of women who ended up with post ablation failure, so moving forward I'm now super apprehensive about any further surgery disasters.

The way he was talking and the questions he kept asking sounded very much to me as though he was simply ticking boxes on a form. His consultations always seem so impersonal and clinical to me, I totally understand he can not give me any false hope or promises but at the same time it's almost robotic the way he conducts his consultations and I've seen this mentioned on local FB groups too so I'm not alone in my experiences with this guy but being the NHS I have little choices and can not swap and change. He may very well be a good surgeon but imo, he has zero idea how to communicate with people on a human/personal level (my friend actually refuses to see him).

I will most likely go ahead with the surgery but I don't know how to deal with the overwhelming anxiety. I'm going to make a GP appointment and see if she can advise me.

It's my local towns general Facebook group. A woman had simply asked how long are the waiting times for hysterectomies at our local hospital, many had replied including me then this woman came on saying how she could never recommend the surgery as she has since suffered catastrophic and traumatic issues as a result, pretty dramatic wording which has really stressed me so much and I can't stop focusing on it. I won't look at the replies anymore. Admittedly, most woman I've asked have said they do not regret their hysterectomies at all so I need to focus on those people instead, I know.

Just wish I wasn't so damn naturally pessimistic!

There is always one person though, no matter the operation or the hospital that will have complications and a horrible time, it just happens.

99.99% people walk down a road no issues but one will trip, fall smash the skull and break their back, they'll shout extra loud so everyone knows. However you don't hear from the millions of others who did it with zero problems. Try not to overthink it. They probably do 30 of these operations a week and how many bad stories have you heard?

I had a subtotal open hysterectomy last year for adenomyosis, the recovery was rough but 100% worth it. I feel better now than i have for years.

I had a partial hysterectomy (kept my ovaries) at 45 because of adenomyosis and endometriosis.

The adeno had also created a large ball of tissue growing at the top of my womb so the surgeon had to remove that and cut out adhesions between organs so the surgery had to be an abdominal.

But everything went well, pain was minimal and it really gave me my life back.

I am 55 now and I have never had any complications.

I had a partial hysterectomy three years ago, aged 44. I was offered one at 38 but couldn’t as my children were too young and active, so I had an ablation but was warned as I was young that my periods may return after a few years (which they did). I was also afraid, I doubt anyone can have any procedure, let alone major surgery, without fear.

The operation itself was plain sailing, and my recovery was textbook. I do put that down to my family making sure that I was able to rest, even when I was telling them that I was absolutely fine and to leave me alone (end of week two!), they rightly insisted that they continued to care for me.

it was the best decision I ever made. As PP said, the trapped wind pain in the shoulders was bizarre but I managed to cope with it. I would do it all again in a heartbeat.

as PP said, bad news travels faster and wider than good news, but from the people I met in real life who had the procedure, we are all so glad we did it and have had little problems. It’s not gossip worthy or an interesting take to tell, but it’s the truth.

Thank you. I really need to stop catastrophising everything.

That’s really very reassuring, thank you.

I had hysterectomy inc ovaries, tubes cervix plus some other bits due to ovarian cancer last year. It was after months of chemo so I wasn’t on top form but honestly it was fine. I followed instructions on recovery- walked asap and did a bit each dat but didn’t lift stuff. All good. And never had any pain that couldn’t be sorted by paracetamol! I’d let them do it again tomorrow.

That’s really good to know, thank you. I hope everything is going well for you.