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Hysterectomy in 7 weeks !!!!!!!!!!!!

(24 Posts)
hulabalooo Sat 02-Mar-13 10:01:39

Hi have just been given date for abdominal hysterectomy am really scared! Have been prescribed esmya which will start to take next week. This is a new medication so not sure how it will go but it is a pre op medication to shrink fibroids (my biggest fibroid is 9cm). It can only be taken for up to 3 months so not sure how much it would work by taking it for 6 or 7 weeks. I am going on holiday in 4 weeks so I am hoping it will stop my period! (I hope it wil be ok to fly taking the medication). Would really love to hear from anyone who is in a similar situation or who has recently had hysterectomy.

LadyMaryQuiteContrary Sat 02-Mar-13 10:10:05

Hi hula. smile

I take esmya, my fibroids were the same size as yours. They started to go down within a few days and they have stopped my periods. I do get night sweats though and a little insomnia, my mood was irritable in the first couple of days but it's settled down now. I've been taking it for a month and the fibroids do seem smaller. I had two large ones which were side by side so I looked 5 months pregnant, my stomach is almost flat now (it's squishy though so I'll have to exercise to sort it out). I have an appointment for a MRI at the end of March so I shall know what's going on then. I had asked about having them embolised rather than a hysterectomy (they always suggest this first for some reason), it looks as though I won't need it though.

You can change the date of the operation to give the esmya time to work if this is any help. It's always a three month supply so seems silly to have a hysterectomy in 7 weeks as you won't have finished the course. They do prescribe it to reduce bleeding during the operations though.

Have a think. smile

hulabalooo Sat 02-Mar-13 10:52:52

Hi Ladymary

I think the reason my date is not too far away is because I said I could go in last 2 weeks of April to beginning of May or else September (I work in a school and as selfish as it seems I wanted to be Ok for summer hols). Don't know if I got a cancellation but all I know is it's bloody quick! I had the option of embolisation - when I asked the consultant at the time what he thought he said if it was his wife he would say hysterectomy. I know I could change my mind. Have you spoken to anyone who has had embolisation?

LadyMaryQuiteContrary Sat 02-Mar-13 11:09:16

I think he would say that! All of them recommend a hysterectomy. It's only when you ask about the alternatives that they mention everything else.

I don't know anyone who's had it, my sister's on the list though (it's genetic). The consultant's letter to the GP has said that he's hoping to avoid any intervention by prescribing Esmya so it gives me the impression that he knows that it's likely to work. They do prescribe it prior to surgery to shrink them as well as for the bleeding. You're not being selfish, it's a long recovery from a hysterectomy.

I'd have a good think. The chances are that they will shrink (I'm aware that they may not work for everyone), it's documented that bleeding is reduced afterwards and they stay reduced up to 6 months after the three month course of Esmya. There's no data after this so they have to say up to 6 months. You could give it a month and see if there's any difference. Don't cancel your operation just yet though. It all depends on whether you can put up with the size of them after the three months. Mine cause excessive bleeding rather than pain so I'm happy to leave them as long as the bleeding is reduced (a flat tummy would be nice). I'm 35 and can't rule out having another child at some point. You have to think what's right for you though.

hulabalooo Mon 04-Mar-13 09:04:05

Morning Ladymary

Today I feel a nervous wreck! I wish I could put it to the back of my mind. What is the wait time in your area for embolisation? Have you had an MRI yet? My Gyno said that I could only have Esmya if I went for Hysterectomy. Not sure why as several people seem to have had them even if they opt for embolisation? I'm guessing maybe it's the cost of them as I have a feeling they are very expensive - I'm sure I read somewhere someone paid (albeit on a private prescrition) about £500 for 90 days of tablets!
For me it's not an issue to have any more children - I am 44, my DH had a vasectomy about 13 years ago (we have a DS who is 23) - but I still don't fancy losing my bits!

anythingforaquietnight Mon 04-Mar-13 09:16:33

Hi Hulabaloo

Sorry you are feeling so stressed. I remember that that well! I had monster fibroids and ended up having a hysterectomy five years ago after a couple of years of trying to find other solutions

This website www.hysterectomy-association.org.uk/, run by the inspirational Linda and its amazing forum helped me though the whole thing. Theres so much information there and the forum is fantastic ( at least it was 5 years ago and I'm guessing it won't have changed much).

LadyMaryQuiteContrary Mon 04-Mar-13 09:18:47

My sister has been waiting for months for an appointment, hers are huge (as in fill most of her abdominal cavity). It took 3 days for me to get an appointment with the embolisation bloke but that's because it was an emergency (the gynae admitted me for a blood transfusion because of the bleeding). He didn't say how long the wait time is for the procedure as the chances were that I wouldn't need it after taking the medication. I haven't had a MRI yet, it's booked in for the 22nd. I can see that they are smaller though, my tummy no longer looks 5 months pregnant!
I'm going to PM you the details of the embolisation bloke here, he's the one who prescribed the Esmya. He's very good. Sounds like your consultant doesn't have a clue. You are allowed to be treated wherever you wish (NHS right to choose). He's doing a further study into the drug so will be happy to see you.

I can understand you wanting to keep your bits. smile It's a hard decision to make, especially as you don't really have a lot of time. You must feel rushed.

hulabalooo Mon 04-Mar-13 10:34:29

Ladymary
Thanks for the info. I will email them as it sounds as though they are pretty clued up in that field.
I feel better after talking to you! Thankyou

LadyMaryQuiteContrary Mon 04-Mar-13 12:37:01

smile He's great. I saw one gynae before I moved (so a different hospital) who's first recommendation was a hysterectomy (I was 34). He only mentioned Esmya when I asked about the alternatives but it wasn't on prescription then. My sister was TTC when she was told to have a hysterectomy. Having it removed seems to be the treatment of choice for some gynae's. I'm so glad there's so many alternatives now but I don't understand the reluctance to tell the patients what they are. They must do so many hysterectomies which could be avoided. sad The person I've sent you the info for wasn't like this at all, he was trying to avoid surgery.

I'm pleased you're feeling better. smile

anythingforaquietnight Mon 04-Mar-13 16:28:35

I'd second what Lady says about alternatives. The first gynae I saw wanted to whip everything out without discussing any other form of treatment. I had monster fibroids too, so huge sympathies to you all . Its a horrible debilitating condition.

Don't be rushed into a decision if you are not sure that its right for you. The website I linked to is badly named. Its a site for women with any kind of gynae problems and is definitely not pro hysterectomy. There is a wealth of information there and women looking for support and help make the kind of decision you are all facing. In depth information about alternatives, as well as the different types of hysterectomy if you do go down that path. I can't recommend it highly enough.

Any gynae worth his/her salt will be happy for you to wait until you are absolutely sure a hysterectomy is right for you and you've exhausted the alternatives and don't want to live with the symptoms anymore. And if you are not happy with your gynae, get another one.

Unfortunately in my case all other paths of treatment failed and the fibroids became so huge they started interfering with my bowel and kidney function and a hysterectomy seemed to be the only option. I chose to have a sub-total abdominal hyst and kept my cervix and ovaries. My GP referred me to a lovely gynae who's opening statement was that he had absolutely no intention of removing my ovaries unless it was completely necessary.
I had the op in just before Christmas and we went skiing at Easter!

I wish I could have avoided the hyst, but honestly, the difference to my quality of life has been dramatic.

My abdominal hysterectomy was the best thing I could have done. Years of suffering over , just like that!

I was sore for about 10 days afterwards but was back to work in 6 weeks and the relief was just amazing. It also relived the pressure on my bladder (had a cystocele) and bowel (rectocele) and haven't now needed surgery for those problems!

I hope you can find an alternative if you are unsure (I was sure!) but the actual op and recovery isn't so bad.

auntpetunia Mon 04-Mar-13 21:45:06

I had my abdominal hysterectomy 11 weeks ago to remove my monster 32cm fibroid! I tried the esmya for a month it was horrendous I bled every day with huge clots, I got a cancellation to see consultant and he changed me to prostap injection to shrink it down, the prostap brings on a medical hysterectomy by reducing hormones to stop fibroid growing

Due to size and position of fibroid I opted for full hysterectomy womb,ovaries and cervix all taken away. And while it's bloody painful in the first month or so I still felt better without that weight on my pelvis and I can now sleep on my tummy.

Best thing I ever did,started on hrt last week so starting to feel great now.

LetsFaceTheMusicAndDance Tue 05-Mar-13 21:10:29

It's good to hear positive stories about hysterectomies. I've tried embolisation and Esmya but neither had any effect. In fact, my periods have been far worse than they were before I started taking it. They are much heavier - daren't go out without mega tampon/night time towel combo and this has been going on since September sad.

My gynae said a lot depends on the fibroid itself as they are not all the same. Mine's as hard as a cannon ball.

OP even though it's taken me more than 10 years to reach the hysterectomy decision, I'm glad I tried the other things as I needed to be in the right frame of mind. I think it's good to start with the least invasive thing and work upwards IYSWIM. If you don't feel ready, don't do it until you do - they can't put it back smile

I had a hysterectomy via my abdomen 2 weeks ago. It is hard but I can see light at the end of the tunnel. You need lots of help in the first couple of weeks as you are to do nothing more than make a coffee.

Mine is down to periods though, not fibroids. Good luck with whatever you decide to do.

auntpetunia Thu 07-Mar-13 11:07:02

hey Gregs glad to hear you are doing ok. Hope you had plenty of help with your son

Hello. Yes, I have although not full time and DH is away on a course next week. I owe a lot to friends. Dinner is on me as soon as I am fit.

How are you doing?

carolinefromhackney Thu 07-Mar-13 11:11:21

I wanted to say I agree with anythingforaquietnight - I volunteer at the Hysterectomy Association their website gives impartial and free advice and talks about alternatives. It's a non profit organisation. The site also has forums where women who are in a similar situation to you chat about their experiences.
Here it is once again
www.hysterectomy-association.org.uk
I am currently sitting next to Linda who was touched by what you wrote anthingforaquietnight!
Good luck, Caroline

shottspar Fri 08-Mar-13 08:21:54

Hi Hulabalooo
I've just noticed this thread - I don't post very much (more of a lurker really), but having gone through a hysterectomy myself I thought I would join in.

My fibroids were discovered when I was pregnant with my DS, who is now 4. Due to pregnancy, my largest (which was outside my womb) grew to 32cm and I could see and feel it in my abdomen/side.

After the birth of DS, my consultant told me that they would just leave things be - due to the size they didn't want to operate as there could be lots of complications.

To cut a long story short, I suffered through 3 years of pain and bleeding before going to see anyone. My consultant gave me an injection to put me into what he called a menopausal state to try and reduce the fibroid - it stopped my periods but did nothing to ease the pain.

I finally opted for an abdominal hysterectomy with the assistance of my most amazing consultant. He was resolute that I would keep my ovaries - I was only 38 at the time - but that my cervix would have to be removed. This worried me enormously at the time, but he explained that if he left my cervix behind, it would be the one place that a fibroid could grow and adhere itself to and would be very troublesome to remove in the future if it came to that.

When I had the op, my largest fibroid was the size of a mini football and it was completely calcified and my womb (which was the size of a 17 week pregnancy) was full of little fibroids. Whilst the recovery was slow, I think it took about 3 months for me to feel like myself, I can honestly say it's the best decision I have ever made. My quality of life has been completely transformed and my sex life is better now than it has ever been grin.

kiwigirl42 Fri 08-Mar-13 15:26:55

thank you for all your advice and information. I'm having a laporoscopic hysterectomy on 12th (next Tues.) and terrified - more of the recovery than the operation. I'm having it for severe migraine which Prostap has helped somewhat. I know that the migraines will be extremely bad post op and its the thought of all that pain that frightens me!
I've not talked about it to many people in real life as don't want to seem as I'm going on about it, if you know what I mean so its been useful to read about it here.

Kiwi, just take everyday as it comes. Your body is an amazing thing. I felt awful afte surgery but it is amazing what every 24 hours brings. I am signed off for 6 weeks but bored to tears so I am logging into work next week to do a few bits from home. Just for an hour or 2 may be not even as much - that is 2.5 weeks after abdominal surgery.

Don't hesitate in telling staff you have trouble with pain. I ended up on oromorph (as high as you can get with pain relief I understand) and got everything under control.

hulabalooo Sun 10-Mar-13 10:08:48

Hi kiwi girl
I hope everything goes ok on Tuesday I can imagine how you must be feeling as I know how I feel and mine is 5 weeks away!

Greg
Glad to hear you are on the mend. Was it as you imagined?

Shottspar
Your post was helpful. You mentioned sex That is something I am worried about. To be honest I think I avoid sex because sometimes it is uncomfortable and I am guessing it's because of freddy fibroid! Does sex seem any different?

shottspar Thu 14-Mar-13 16:46:17

Hi Hulabaloo
Sorry, I've not been on the computer for a few days, but I didn't want to leave you unanswered.

Bit of a TMI alert now I think blush. I too put off having sex with DH because it was just so painful, the weight of the fibroids in my pelvis was just too much to bear. To be honest, I think we went a good few months without sad.

Because I had my cervix taken away, it means my vagina is now a bit shorter than it was before (I did say TMI!), and that, combined with no pain has totally transformed our sex life. I was worried about dryness, but that hasn't been an issue at all and orgasm during actual intercourse seems much easier to achieve. I'm not sure if it's really because of the physical changes made to my body or just the complete lack of pain, but honestly, I feel like a different woman grin. I totally appreciate that it may not be like this for a lot of women, but I had an excellent consultant surgeon and I feel great now.

How are you kiwi?

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