Feeling very anxious about my hysterectomy after reading horror stories on support groups

[UnitaBath]

I have a hysterectomy mid October - I am shitting myself.

I have struggle for years with gynae issues and have had endless treatments and procedures but nothing has helped. A year ago I decided to go on a waiting list for a hysterectomy, I knew it was a long NHS wait so I shelved the worry and got on with things kind of hoping menopause would kick in and all issues would resolve/disappear but I am 53 and still having a cycle so I continue to feel like crap a lot of the time (but it's been so chronic that I just put up with it I suppose).

So my op is now scheduled for October, I have had the pre-op appointment and I am now just waiting (and fretting and stewing in my own juices!). Of course I have done the absolute worst thing a major worrier can do and I have joined all the hysterectomy support groups on FB and Reddit. Google will tell me that most women don't regret their hysterectomy but these support groups say otherwise and now I am seriously thinking of backing out. Logically I know people who have great experiences of things don't often take to the internet and those with bad experiences need support and guidance but my brain isn't getting that message.

I have adenomyosis, a failed uterine ablation, a retroverted uterus which I am sure presses on my bowel causing my digestive issues and I also have endometriosis. My gyane is an endo specialist and is planning a robotic laparoscopy hysterectomy with excision which I thought would be easier but these support groups are full of these scary stories which include all kinds of disasters such as loss of blood, bladder or bowels being cut by mistake, blood pressure dropping or going so high they nearly died, unmanageable pain, prolapses, massive weight gain post op, instant surgical menopause which causes horrendous symptoms. One woman has told me this morning that since her hysterectomy she has had to have further ops every year since and has terrible nerve pain and uncontrollable interstitial cystitis.

The problem is I had my fingers burned with the ablation, the internet is full of women telling others not to have this procedure because it has left them with more issues but I ignored that and took my gynae's advice but mine did fail and I too became one of those women so now I am stressing the hysterectomy will go wrong too and thinking to myself 'Wtf am I doing/going to do'

I had mine done laparascopically and it was fine. One night in hospital (could have stayed for 2 but it was covid years so chose to go home). Pain managed with paracetamol. Took me about a month to fully recover but no horror stories or difficult sequelae.

I was in a bit of a panic about it but it was a good decision.

I think you will regret not having had the hysterectomy if you cancel it. Your symptoms will not just disappear. And millions of women worldwide have very successful hysterectomies with no complications, especially ones done laproscopically. What's your plan if you do go ahead and cancel this long-awaited operation?

I had a full hysterectomy laparoscopically everything removed. I was nervous, but the op was fine. I was in hospital for two nights.

The pain was bearable with paracetamol, but the after op gas was far worse for me. Highly recommend peppermint tea and peppermints for the gas.

My recovery was slower- eight weeks and the post hysterectomy fatigue was real.

If everything is removed it will put you immediately into a surgical menopause, so be prepared for all that may entail.

Big knickers ( full briefs), cotton nighties or nightshirts and loose trousers and tops are your friend post op. You do not want anything to irritate and pull on your incisions after surgery. I lived in loose clothing for 8 weeks while recovering.

I was unable to shower for the first few days after the op, so used adult body wipes, which did the job. A grabber to pick things up with also helped.

The plan if I don't go ahead is probably to spend the next few years stressing about ovarian or uterine cancer because of the uterine ablation. If I were to unfortunately develop cancer in the uterus I wouldn't experience the common symptom of post-menopause bleeding and it may go undetected until it's at a later stage.

For that reason alone I know that I need to go ahead with it all. I am also hoping the pressure of my uterus sitting on my bowel area may lessen my digestive issues but then I worry it could make it worse.

Yep! I am a worrier, I have adhd and my brain just will not STFU.

You will be fine, stop looking at the support groups. They aren’t helping. I had a hysterectomy 12 years ago for cancer. I made a full recovery. Ask me if you want sensible advice.

Thank you, that's encouraging.

I have heard the gas pain can be bad, I already suffer badly with IBS and SIBO so thankfully I have lots of peppermint oil and wind releasing products already at home and will stock up on more.

I have oestrogel and utrogestan at home on standby so will use that as soon as I can.

I work part time for my sister and she has told me to take 8 weeks off so I will make the most of that.

Thank you. Good to hear things went well for you.

I know, I have logged out of FB this morning, I really need to keep off.

I had PCOS and adenomyosis. My hysterectomy was, literally, life changing. I was terrified leading up to it, but absolutely the best decision I could have made. Whole lot gone, good riddance!

That's really good to know. I really do want it all out I just wish it wasn't such a big operation. I've had endless hysteroscoies, colonoscopies, gastroscopes etc but never an actual op and I request all of my procedures under a local as I am terrified of general anaesthetic but obviously I will have no choice but to go under a GA for this.

I had a robotic radical hysterectomy 2 years ago and honestly it was totally fine. I didn’t need any pain relief, except paracetamol that evening for a headache.
i was uncomfortable gut wise, but bearable.

I felt a bit fragile for a few weeks afterwards, but probably as all done very quickly due to cancer.
i am unable to have HRT, so do have some urinary symptoms, but all manageable.
please stay off of the groups; they are dreadful and full of people with a tale to tell…

Thank you so much, reassuring to hear things went well for you.

I had a hysterectomy for prolapse, along with surgery for bladder prolapse. It was fine. Not much pain, no side effects. I was weak for the first few weeks and tired for some months but no major issues. I know other women who have had no problems and in fact recovered quicker than me.

I didn't even have the gas pains.

I keep reading so many women saying the exhaustion/tiredness goes on for weeks. I’m taking 8 weeks off work so hopefully my energy will pick up by then.

Good to hear the op went well for you though.

I really hope I don’t get them, I have IBS and SIBO so I’m very gassy at the best of times which does cause me a lot of pain so fingers crossed I won’t get any extra issues from trapped gas, not looking forward to it in my shoulder area as so many say it sits there for a few days.

I had a laparoscopic assisted hysterectomy and oophorectomy 5 years ago. Very little gas pain. My bladder was a bit slow to get going again, so I was in for two nights with a catheter but other than that it was fine. Recovery was 4 weeks before bring back at work, 6 weeks before I felt fully recovered. HRT took about 3 months to adjust my dose. 25mg oestrogen patch was a bit too little, 50mg was too much, so I'm still cutting a slice off the 50mg patches now to keep it balanced. No regrets at all.

That's good to know, thank you. I will also keep that in mind regarding the hrt, will definitely adjust if it isn't doing anything. I currently have oestrogel and utrogestan patches but not sure if they will suit as I haven't tried them (tried some time ago but it made my pain worse).

If you are having your ovaries removed you may well not need the progesterone component of HRT.

Because I have endometriosis they've advised I take both but tbh I'd rather take oestrogen only and take the risk. My mum has hormone sensitive breast cancer and research shows oestrogen only hrt after hysterectomy has a much lower risk of BC than combined so may just take the oestrogel.on it's own.

I have an appointment with a menopause specialist in a few weeks and I'll ask her if it'll be ok 🤞

Yes, you won’t need progesterone once you’ve got no uterus, just the oestrogen.

I was horrendously anxious about my hysterectomy. I had stage 4 endo and adenomyosis and multiple gynaes had told me that I couldn’t have a hysterectomy due to bad adhesions, but I finally found one who agreed to do it. It’s the best thing I ever did! I had some complications but I got through it and I’m great now.

Stay off Facebook, and try and put it out of your head. It’s not until October so you’ve got a whole month to try and forget about it and distract yourself. Ask your specialist for a pre-med sedative. You’ll be walking on air in a few months!

Thank you, that's very reassuring.

I have decided today that I must put it out of my head until the day, I've made myself feel very unwell with the anxiety and now have a terrible IBS flare up

I need that like a hole in the head!

I was exactly the same. I convinced myself that I was going to bottle out at the last minute, then I suddenly started bleeding horrendously heavily the week before. I was coming home from France on the Eurostar and it was like a blood bath - so embarrassing! It felt like a sign from the universe telling me that I had no choice and needed to stop being a big wuss. 😂

Just put it right out of your mind until just before. Focus on the thousands of women who have this surgery every year and are given a new lease of life. No bleeding, no big clots, no pain, no exhaustion, never having to worry about leaking. I wish I’d had it done years ago.

I can worry for England, especially about an NHS procedure, but had a surgical hysterectomy 14 years ago. Yes, it’s major surgery but routine for surgeons (who have the expertise and desire to make life better for you). Lots of women undergo a hysterectomy then laud its benefits. I am very much one of them.
Look at the handholding threads on MN. You’ll realise you’re not alone being anxious but, honestly, you’ll be fine. No one will take more care of you than anaesthetists, surgeons and medical staff in an operating theatre then supportive and encouraging nurses as you recover post-operatively.
I had shedloads of trapped wind after a ECS but naff all after a hysterectomy 29 years later. It might be the same for you.
A hysterectomy could be a turning point in your life.
Why continue as you are when there’s a wonderful chance for improvement? The worrying and waiting are the worst part. In a few weeks’ time you’ll be a happy and more relaxed member of our post operative club, Welcome. 🤝
edited for grammar

Thank you for you encouragement.

I really do have a very limited life right now and spend a lot of time at home in pain or some kind of discomfort (or in an IBS flare up which I’m sure is exacerbated by my hormones and gynae issues). I look on fb at all those I know, out there living life and having great experiences whilst my life floats on by. I am desperate for that to change. Just wish I wasn’t so lily-livered lol!

I had an enormous fibroid, junked all it touched, thought I had IBS for years but no, it was pressure from a uterus filled with a fibroid, as was the twitchy legs, very low blood count, feeling shit for years but hey, you just get on with it. Op done, back home, back at work and driving within the month, even the consultant was shocked at the recovery. However having felt so awful for years, the relief was wonderful. We are all different and ignore the horror stories, but focus on how great you will feel. Good luck.