Pending Hysterectomy Advice

[BD2RE]

Hi everyone,

I’m feeling anxious to write here, it’s only tonight I thought maybe something like this might help, alongside those who know and are experiencing the same as me.

I’m due to undergo surgery for a hysterectomy in December, and am now starting to feel incredibly anxious. Sorry for the essay, but, my story so far:

I’m a 33 year old mum to a 5 year old (who was a struggle to conceive at the time). We don’t want any more children, however I’d be lying if I said I didn’t regret trying for a second a few years ago whilst my boy was a lot younger.

Following several years of misdiagnosed ‘bad periods’ I had a laparoscopy last year that discovered late stage 2 DI endo and adenomyosis. The consultant removed what he could of the endo and the results seemed promising. I unfortunately struggled with a couple of wound infections after the op that put my recovery back to about 6 weeks, however without those, was up and moving after a week or so.

I had the mirena coil fitted which after about 3 months, settled and I seemed to be relatively pain-free. After about 6-8 months the pain returned monthly (mainly around the time my period ‘was due’ and I was prescribed a progesterone only pill alongside the coil. This also seemed pretty effective up until July this year when the pain increased tenfold.

Fast forward to now, I’m in absolute agony most days of the week. Currently managed by a combo of paracetamol, ibuprofen and mefanemic acid, as well as a mini Tens machine, but increasingly requiring cocodamol/stronger pain relief. This weekend just gone was the first time in a while I’ve remained horizontal on the sofa. I am absolutely exhausted with the fatigue from the pain.

I’ve been advised over the last few months on a number of options for ‘what next’ by my private consultant, but have opted for a hysterectomy, which is booked for 5 weeks today. They plan to only take my uterus unless my ovaries are unhealthy, in which case I’ve confirmed they can take those too.

Only now am I starting to think about the enormity of this op, and am here for advice really, or any kind of support to get me through this. Mentally I’m concerned I might start to spiral.

Have any of you had this op? Did it return? How long after? What was your recovery like?

I’m seeing my consultant again soon and as much as I trust him, I need to hear from other women who fully understand this debilitating pain, frustration and exhaustion. I’m scared.

Thank you for reading.

[Tulip1983]

Oh, BD2RE. I can really empathize. I was added to the waiting list to have my uterus and ovaries removed on Monday. I'm still in shock and am so scared about what this means in terms of my physical and mental health. I send you love.

[BD2RE in reply to Tulip1983]

Thank you so much

[Ronsk]

Hi

I've just had a total hysterectomy on Thursday last week, having everything removed and excision of endo. I was booked in for 4 hours. However, there were complications, and I was in theatre from 9.15 until 6.30pm . My consultant said it was the worst case of stage 4 endo he had dealt with and longest . He said my mri appeared not too bad but when he got inside everything was frozen and stuck together. My pain levels were quite bad prior, and hearing what they told me made me realise I had done the right thing as I was so anxious about the op and if I was doing the right thing. I am in a fair bit of pain and still in hospital, able to mobilise slowly. I don't feel any different otherwise.

My consultant tells me that doing the total hysterectomy will definitely improve my symptoms and theh have had good feedback from lots of patients. I'm 41 and nearing the menapause anyways so I thought why delay the inevitable. You're much younger.

Follow your heart and good luck with ut all x

[Username12345678 in reply to Ronsk]

Best of luck with your recovery. Make sure you take all the time your body needs x

[Tulip1983 in reply to Ronsk]

Sending love. Hope your recovery goes well. xx

[BD2RE in reply to Ronsk]

I hope you're recovery has been smooth and you're healing. Thank you for commenting xx

[Hells83bells]

hello

I'm sorry to hear how you have been feeling. I had my radical hysterectomy about 12 weeks ago. Feeling great. And for me it's been life changing. I obviously can't say what the future holds in terms of Endo coming back but not having my periods has been amazing. HRT is going well too. Have you tried zolodex? My Gyne said because thing improved for me on it I would be a good candidate for the op. Was a good try before I buy type thing. I still get a bit of pain in my left hand side but all in all don't regret it all.

[BD2RE in reply to Hells83bells]

Hi, thank you so much! Zolodex was offered to me, but I declined in place of a hysterectomy instead. I had surgery 10 days ago and am now battling my way through recovery, the first week has been so much harder than I expected. I hope you're recovering well!!

[Zanlancaster]

Feel for you. I had laparoscopy 8 years ago and they offered hysterectomy but I was doing ivf and didn’t want to give up but I should have. Many rounds snd it never worked and years of crazy pain. I wish I’d accepted it and enjoyed life hopefully pain free. I’m having ovaries and tubes removed in December- my pain is very specific to my ovaries so she feels best to leave uterus in place. It’s a big decision, maybe see a counsellor to talk it over. I’ve had a decapeptyl injection before the op - said to shrink the endo. It’s definitely not easy. I think if you can talk to a counsellor it’s worth a try.

[BD2RE in reply to Zanlancaster]

Thank you for your comments. I am speaking with a therapist weekly and it has really helped me come to terms with my decision of a hysterectomy. Wishing you luck for your surgery if you haven't had it already. I had mine 10 days ago, everything but my ovaries. Look after yourself!

[Username12345678]

hi lovely, it’s normal to feel anxious before such a huge operation. I had my total hysterectomy in Jan 22 after a long battle with endo & adeno. All I can say is it was the best decision! For me I think the adeno was causing most of the pain and stopping me from living my life fully. I wish I’d have done it sooner. Best of luck to you. Feel free to DM me if you have any questions or would like any tips on things to prep etc x

[BD2RE in reply to Username12345678]

Hey, thank you so much for commenting. I had surgery 10 days ago and am now battling my way through recovery, the first week has been so much harder than I expected. Weirdly you were right. We expected worst case with the endo but following a successful laparoscopy last year, it was barely stage 1. The adeno however, different story, my womb was completely riddled with it so he's confident that's the cause of pain. Thankfully I kept my ovaries so no HRT just yet. Thanks again for the support.

[Username12345678 in reply to BD2RE]

Just wondered how your recovery was going? Hope all is well x

[Avourneen]

I could have had a hysterectomy the first time I had my surgery but wanted to try for a baby. That didn't work out and now a few years on my endo is so much worse, stage 4 with a totally frozen pelvis, diphragmic endo and endo right through the bowel. It's so bad and so widely spread that I can not have a hysterectomy now, everything is too stuck together. So I would say do it now and avoid the endo spreading more and more. Also, ask about having your ovaries removed,I know you are young so that might be too much, but the chances of endo coming back while you keep them is much much higher than if you have them removed. Talk to your surgeon about the risks of not having it and the risks of having the op.

I know having a hysterectomy can cause a lot of hassle but it will stop your periods and stop a lot of pain. Also wait and see what people who have had it done say on here so you have a range of views especially from women who have had one. MY guess is you will feel much better after it. Good luck. xx

[BD2RE in reply to Avourneen]

I'm so sorry to hear how bad your condition has got. I opted for the hysterectomy and had surgery 10 days ago, now battling my way through recovery, the first week has been so much harder than I expected. I was lucky enough to keep my ovaries as they were healthy so thats a bonus I wasn't expecting.

Thank you again for your support xx

[Avourneen in reply to BD2RE]

Take it easy, really don't try to do anything much for at least 6 weeks then just take it really slowly. Don't lift anything heavy and just start by walking a little bit every day I started going from bedroom to bathroom then to kitchen, then to the next house, then round the block etc. Take it easy and you will get there.

Good luck and stay strong. xxx

[Sunset-lady]

Hi I'm the same as Avourneen. I can't have a hysterectomy as it's all compacted now with stage 4 endometriosis. I would do some research. Read some books - very good one one Amazon called Surgical Menopause. I would try to keep your ovaries ( the comments on here are correct about endo coming back if you keep them but you are still young and they will be pumping out hormones your body still needs. Don't take my word for it read about it). I'm 50 and struggling now with fibroids which make me flood all the time. I would love a hysterectomy. Good luck x

[BD2RE in reply to Sunset-lady]

Thank you so much for your comments and I'm so sorry to read how bad yours has got. Sending you love xx

[Sweetie456]

I had a total hysterectomy around a year ago. I had endo and adenomyosis. They had to take both my ovaries because it was everywhere. I was anxious too, but feel so much better and glad I went through with it. The op was painless, I just felt a bit of discomfort where they’d pumped me full of air but apart from that I was fine. The only advice I would give would be if they take both your ovaries speak to your doc about HRT as soon as you can. I wasn’t given any advice and just sent home. The hormone drop hit me hard! I’m now on oestrogen only HRT and feel human again

Good luck x

[Sunset-lady in reply to Sweetie456]

Hi shouldn't you be on progesterone too if you have endometriosis? I've read quite a bit and most people comment on this fir patients with endometriosis we need both post hysterectomy due to protecting our womb lining?

[Sweetie456 in reply to Sunset-lady]

Hi, yes my doctor kept telling me I needed progesterone too because I had endometriosis. The progesterone hit me hard and I struggled to function my moods were all over the place. I eventually paid for a private consultation and the doctor was really helpful. Apparently it’s absolutely fine to have oestrogen only HRT, unless you start to get symptoms such as pain and then there are different options to consider. It’s frustrating that doctors aren’t yet trained to give us advice on menopause and HRT

[BD2RE in reply to Sweetie456]

Thank you so much for this. I had surgery 10 days ago and am now battling my way through recovery, the first week has been so much harder than I expected. I was lucky enough to keep my ovaries so am feeling very grateful for that. xx

[Damby]

Hi! I had a hysterectomy (cervix, uterus, fallopian tubes) for endo and adeno, aged 32. I had had my children and was in a similar state to you pain wise. I am now 4 years post surgery and I can say without a shadow of a doubt it was the best thing I have EVER done. I still have my ovaries and occasionally have endo symptom flares but I can manage it very well with keeping my stress levels stable and eating well. I have had a handful of episodes where I needed really good pain relief but it was always short lived and the incidents have been further apart to the point I can’t remember the last time I was in debilitating pains (must be a year or more ago). I get to be a present mother and wife, enjoy my work, and wear dresses for the first time without worrying I was going to spontaneously haemorrhage in the middle of my cycle and have blood on the floor beneath me (happened once🙈). I have struggled with a few adhesions, and some weight gain, but these feel like a small price to pay for the freedom and wellness I have. It’s going to be okay. All the best. X

[BD2RE in reply to Damby]

I think this post was the deciding factor for me, I'm so grateful for your comment. I had surgery 10 days ago and am now battling my way through recovery, the first week has been so much harder than I expected but each day is getting a little bit easier/more movement. Thank you again xxx

[Damby in reply to BD2RE]

Dearest BD2RE

Wishing you all the best with the recovery ahead. Nice and slowly does it. I will be hoping for the best of outcomes for you. I took things very easy for as long as possible. Within 8 weeks you won’t know yourself. Always here if you want to message or chat! Take all the meds all the time - don’t forget. Move and stretch as you can! Sending love.

[Stitchrunner1]

Sure you are going to be anxious. It's a big operation you are going for. You are putting your trust into the hands of strangers. Think on this though, these surgeons and nurses dedicate their lives to making you well. It is not just a job to them, it is a vocation. It might be a surprise but all the cleaners, porters and clerical staff are routing for you. They will support you through the actual day.

Think on this also. It will be the beginning of the rest of your pain free life. No more pads, not more tampons, no more bleeding through your clothing! You will be free. You will be able to go on to the beach in a swim suit without the aid of a futon shaped period protection unit that everyone thinks is your sun bed. You will be able to shop 'till you drop! No dropping in your underwear. And you will be able to play with your son. That has to be a bonus.

I can not tell you how liberating my hysterectomy was. I am not making light of your loss of fertility. It comes hard to some people. However, there are ways you can help other children. Believe me, I had one daughter and I became crazy aunt to all her mates.

One word of advise I will give you. Please do not do what I did. I had a long scar and staples. They were sore but life goes on. I got into my car and I drove. I went about my life as normal. Until. I parked my car on the hill. I got one leg out and had one leg inside, and the car began to roll. I hadn't pulled up the hand brake enough. Hopping on one leg and trying to stretch into the car, was to say the least painful. I eventually managed to get inside the car and pull the handbrake on fully. There was a reason my child's friends called me crazy.

But it just goes to show there is stupidity after hysterectomy.

Buy yourself some nice bath stuff for when you are able to have a bath. Trust me. It will be the worst and best day in your life. Your wedding day won't have been as good as the day you realise you are pain free.

[BD2RE in reply to Stitchrunner1]

Thank you so much for your lovely comments, they are very much appreciated xx

[Damby]

just to say I’ve been thinking of you and hope your recovery is going well xx