Hysterectomy.

[Beanfield]

Hurrah and Hallelujah. My uterus has been given an eviction notice!

30 years of being a complete bitch. Let me down twice (miscarriage and ectopic). Did what it should do twice (2 grown up DDs). Never officially diagnosed with anything but suggestions have been PCOS and endometriosis. 30 solid years of hideous periods. 30 years of being fobbed off by assorted GPs who told me it was normal to faint, vomit, incapacitate and take over my life for one out of every three or four weeks.
It’s got to the point where my cycles are just 18-20 days long, I bleed huge amounts for 5 days (emptying cup every 2 hours), overflowing, clots. Light bleeding on and off for a further 4 days. Bleeding on and off randomly mid-cycle. Puking and dizzy. Period diarrhoea, excruciating, labour style pain. Another 3 days of pain while i ovulate plus bleeding then too.
Tried everything. Mirena - I bled for 8 months then it fell out. Painfully. Pill - unhinged. Drugs - I’m allergic to the good ones and the others don’t work so well. Herbs, flowers, tea, homeopathy, diet - all bollox.

Finally saw a Dr who actually listened and agreed to whip the bugger out. Not sure how yet as apparently it's ‘bulky’ (like the rest of me) so need a scan to see how big it is. Also waiting on smear results and endometrial biopsy (which hurt like a bastard and is still hurting 4 days later).

Megan I didn’t see you posted as I half wrote my post then got caught up in morning DC stuff before finally posting and didn’t refresh.
Seriously? Letting yourself get in that state!! Awful attitude. Sorry it couldn’t be keyhole but it’s finally all gone so hope you will soon be feeling like a new woman. I think having the catheter removed was the worst bit! Hope you get home to your own bed soon.

Foo I was given injections to take home and did them up until Day 10 post op. Strange-you would think all medical advice would be the same in our situation and not regional. It would be weird for England & Wales to have wildly differing protocols re risk of clotting to Scotland.

Megan I'm glad you are ok and hope you're feeling a bit better today. My god...letting yourself get in such a state. Words actually fail me?!

Could I ask you ladies a question please? How long have he taken/been advised to take off work? I know my endometriosis is fairly advanced and the consultant said recovery could be 12 weeks, could be sooner could be later. I have an absolute weapon as my line manager in work. She upset me yesterday when she told me about a friend of hers who she knows was off work for a good month??? I didn't have the nerve to say what the consultant had told me so I just said nothing. Ultimately I will take what I need to take. In 17 years I've had only a handful of days aside from pregnancy related sick leave as I had hyperemesis. It just really upset me and I know without a doubt she was saying this to lay down her expectations so I would feel guilty.

I had my op twelve weeks ago and only went back to work two weeks ago. I could probably have gone back earlier though, possibly from eight weeks. However, I've been struggling emotionally post cancer, and felt I just needed a bit more time.

I feel absolutely fine now, except for persistent chest pain, when I breathe or move my left side (e.g. when changing gear). I feel like it's possibly residual trapped wind from the surgery. Going back to Gp tomorrow about it.

Those links about sexual function after losing a cervix are interesting. I'm surprised I haven't read them before, it feels like I've read everything else on the internet! We've been having sex, and whilst it's quite liberating to not worry about contraception, it is different. My orgasms are definitely not the same, and it makes me sad. I'm only 36.

My op went well, but with the chest pain, no more periods, changed orgasms, it's safe to say I feel like it has aged me. It's been a hard six months. I'm sure it will be fine though, I've been lucky.

Hope all goes well for those awaiting surgery x

I’m going home today. I am generally feeling ok apart from killer trapped wind and I am really swollen!i look about 6 months pregnant.

I haven’t got to see my surgeon again because he’s not in but I do have a follow up outpatient appointment booked with him for 3 months time. I aim to get all my answers then.

I have several days worth of blood thinners to inject and I have every intention of asking when I can have a celebratory glass of champagne!

To all those of you who have this to come, it does get much better very quickly and make sure you take all the drugs they offer you.

Is there anyone here who has had all the symptoms of endometriosis, been investigated and but doesn't have endo? basically professionals unable to explain cause of pain?

Megan unfortunately you have to wait until you have finished your injections before you raise a celebratory glass. Believe me I read and re read the info in the hope I could partake sooner. Glad you are home, you will be more comfy in your own bed AND it will be quiet enough so that you can actually sleep!

IRemember mine wasn’t for endo, just fibroids and a bulky womb with possible adenomyosis so hysterectomy was laparoscopic vaginally assisted. All the info pre op said 6 weeks and I was issued with a 6 week sick note when I was discharged and told to speak to GP if I needed it extending. I am 3 weeks & 3days post op and physically feel well enough to work as I have a sit down job and only work part time but I have been told I’m not allowed to drive until at least 4 weeks anyway so will just enjoy the last two weeks off getting fully fit. It really is going to depend how difficult is is to remove all your endo. Stuff her expectations. A sick note is a medically qualified professional stating you are unfit to be in work. If she mentions it again just say “well isn’t your friend lucky she was just a straight forward hysterectomy with no complicated endometriosis like me” and do the MN head tilt

Shimy yep. After a lap in 2017 I was simply told that up to 40% of women have “unexplained” pain and heavy bleeding.

Appin I wondered how you were getting on. Sorry to hear there has been a change in orgasims, I’ve a few weeks before I could even contemplate trying but, after re reading those links, I’m a bit terrified to be honest. I hope work isn’t too exhausting getting back into the swing of it and that life is looking brighter after all the treatment you have had to go through because of cancer.

Stripes Thanks for your reply. I think there's at least a sense of vindication when you get diagnosed, with something -endo, fibroids at least its evidence something is wrong but when its 'unexplained', doctors just think you're making it all up. Its very frustrating.

Stripes what did you do in the end? apologies if you've already said, i didn't read all 13 pages.

Just read upthread that you've recently had surgery, of course i read it before but got distracted mid-reading and forgot. Hope you are much better.

Dropped off here. Really glad to read everyone is doing well in circumstances. I have a September date for mine. Am have my the rear already as am 8 days late for period which is latest I’ve been and can’t help thinking what if this is things slowing down and it would improve.

Waiting to hear from GP about starting the injections to induce menopause. These were just tacked onto end of consultantion so don’t feel I know much about them and it worries me somewhat but guess it will be fine.

What date are you in September post? I'm Saturday 14th. The consultant I have does one Saturday a month and we've gone with that over a weekday as my parents will take the kids for a sleepover so dh can stay with me for as long or as little as I want. I'm lying in bed with periods flowing and cramps thinking only four more of these feckers to go!!!

Thanks Stripes! Sorry, didn't mean to alarm re the changes. It's still good, just different. I guess it will become a new normal in time.

I'm having a chest x-ray today- my GP is a bit worried about my ongoing chest pain after laparoscopic surgery. Hope they can find a reason and I'm not just stuck with this!

4 days before you Iremember. You poor thing, hope you start feeling better very soon. Period still AWOL here though have cramps. How bloody ironic is that, as soon as a date comes through no period.

Appin, hope they get to the bottom of it.

How did your x-ray go Appin? I hope everything is ok.

That is interesting to read about the orgasms. Mind you, mine were really painful before so I’m hoping it’s an improvement in one way.

I just had my first post op poo. I’m sorry but I felt the need to share with people who would understand what a momentous occasion that is! Does that mean I can stop taking the lactulose now?

Hi everyone
I am having surgery on Tuesday and suddenly feel a bit scared and ubderpdepared.

I am having everything out - ovaries and cervix too. Have been on zoladex for 8 months and am on tibolone already so hoping the menopause bit will be ok.

I am most scared that might switch from laparoscopic to abdominal depending on what they find and also that I dont have any slippers yet 😯

Please give me some useful tips.

Hi Eustacia.

I had mine 8 weeks ago, abdominally. My top tips are...
Take all the drugs you are offered!
Don’t be disheartened if you are in a lot of pain immediately post op - it improves really, really quickly. Even two hours makes a huge difference.
Take sucky sweets and a big sports bottle for water to the hospital, your throat will be dry and you need to keep well hydrated.
Don’t lift anything when but keep moving around

Good luck!

Hi Eustatcia,

I just had that exact same scenario. I went in for my laparoscopic surgery on Tuesday and they had to switch to abdominal because of undiagnosed stage 4 endometriosis.

It was honestly fine. My scar is actually the bit that is bothering me least and I appear to be healing well. Fingers crossed it stays laparoscopic for you though.

A pp gave me a great tip upthread to have the bits you will use frequently such as mints and lip balm in a sandwich bag with handles. That way you can just grab the bag and don’t need to go digging for things. It was so useful it’s worth repeating.

Good luck.

Thank you ladies. That's so heartening to hear Megan. I am a control freak so the possibility of an unplanned event is freaking me out.

However....

• sports bottle
• sweets
• clear bag with handles.

Thank you :)

Best of luck Eustacia. I have a similar fear that what I understand should be straightforward may end up more complicated but I guess we deal with that as and when we need to. It's so good hearing other stories on here. That's an excellent tip about having the bags with things you need in them to hand. There's nothing I love more than organising so I'll try to focus on my love of that. Long way for me to go still but noting tips now as no doubt will forget the closer it gets.

I wouldn’t worry too much about the slippers either if you don’t normally wear them, neither do I.

The compression stocking they give you have rubber grips on the bottom like slipper socks. I took some but didn’t bother wearing them.

Yeah I cant actually bring myself to buy slippers when I know I wont ever wear them again.

Hi Ladies I had a laparoscopy and hystoscopy on Wednesday- I had 'lots' of polyps removed and have adendometriosis? Looking forward to a hysterectomy after these results.
I am in quite a Bit more pain that I expected and wanted some collective wisdom please.
How much did you bleed after these procedures? I am used to extremely heavy periods and cramping but this is bad by Rhodes standards.
I didn't really start bleeding until yesterday so 48hrs post op, it is as heavy as my period if not a bit more.
Normal or should I worry?

Iamnobird I did bleed a lot after my hysteroscopy but I think that is mainly because I had my mirena removed at the same time and that can cause a heavy bleed in itself. I haven’t had a laparoscopy so can’t comment.

How are you now, has it started to ease?

Hi thanks for replying.
I flooded a couple of times yesterday. Pain is better so I'm not as worried now. Taking another couple of days off work though, not willing to put work trousers over my swollen belly and risk flooding etc

Good idea. I flooded onto a chair in a meeting once and it wasn’t pleasant.

Hopefully it will continue to ease up pain wise.