Hysterectomy looming.....

[Random_Brunette]

Hello,

I joined a while ago but have been lurking reading as much as I can.

A bit about me. I've never really suffered with any obvious symptoms telling me something was wrong. Periods got heavier and they began to hurt more and more but I put that down to age. I was 39 at the time. I went away in December 2018 and on my travels back I started suffering from really bad abdominal pains. With basically luck and a lot of peppermint tea and painkillers I managed to make it back in one piece but the pain got worse and then all of a sudden it just stopped (genuinely thought at one point my appendix had ruptured! A bit over dramaticbut it was that abrupt). Cutting the story short I went to my GP and then for a scan and turns out I have a triple whammy! Cysts on my ovaries, massive and not so massive fibroids inside and outside my uterus and of course endometriosis.

I has a laparoscopy done in May to drain the cysts and look at the rest but it had to be cut short as I lost a rather large amount of blood. I was diagnosed with level 4 endometriosis and my surgeon wasn't able to drain all the cysts as everything is stuck together (plus the blood loss). It was decided at the time that I will need a full hysterectomy (inc ovaries and cervix).

I've just finished a 4 month round of Prostap and that was not fun and continues to be a bit of a nightmare but I'm dealing with it although I had to stop early as I think it's making me worse or my issues have got worse and the Prostap is masking that.

I've also changed my mind and asked my consultant, if possible, I'd like to keep both or at least one of my ovaries. She has said she doesn't know how viable they are so it's a wait and see.

I've been ok up until now but I'm beginning to get a bit uneasy. I've made my peace with not having my own children and to be honest I'd rather adopt anyway so I don't think that's the issue I think it's more that my sleep deprived brain is just freaking out.

I've read as much as I can find and it's been really helpful. I'm curious about those that have had a hysterectomy via key hole but sadly due to the size of my fibroids and the fact that they haven't shrunk following Prostap means that isn't an option for me and hasn't been suggested.

Sorry to go on and on but just so want to get some advice, suggestions, hints and tips from people that might understand and are in the "know"

Thanks

[Joey221]

Hey, I’ve literally just signed up to this and already finding peoples posts really help and confirm I’m not the only one suffering in silence!

So I have had quite a lengthy journey, not too dissimilar to yours...

I was diagnosed with a ovarian cyst in 2008 so had an emergency op to remove it. When they went in they found grade 4 Endo.

Had never had any issues with periods but as soon as I’d had the surgery the symptoms of the Endo hit me like a bus. A year later I was in for another lot of surgery to get rid of the Endo via keyhole - surgeon was happy that it should be the end of the suffering.

A year later I was in having a full abdominal hysterectomy. I took this as a huge positive though as I thought this would finally end the pain and discomfort and also need for what was yearly surgery...they did however keep my ovaries intact. I was 31 at the time and they were both healthy so reluctant to touch them.

That was nine years ago. Since then I’ve had two further keyhole procedures to remove further ovarian cysts and haemorrhage and I’m just awaiting a date for another operation to finally remove my ovaries and anything else that may have planted itself in my pelvis in the meantime - the journey has taken 10years!

Just had my 7th ProStap which has helped my pain a lot alongside HRT to prevent menopausal symptoms. The Endo pain is fighting back and is currently winning.

Have a think about the removal of your ovaries again, they are still mega active and can still cause you issues later down the line. It feels like Groundhog Day when you start with the symptoms again and I’d hate you to go through more surgery....the more surgery you have the more your bowel and bladder become at risk in regards to the scar tissue.

Not an easy decision I know, trust your surgeon. They know what’s best. I wish mine had taken everything out at the time as I’d be living a freer life by now.

Hope that helps, we don’t have it easy us ladies ☹️ x

[Random_Brunette in reply to Joey221]

Hi ,

Sorry it's taken a while to reply. As I've put below I managed to pick up a wonderful cold that's knocked me out so haven't really been able to respond at least not in a way that would make sense!

I have been on Prostap since October but I stopped it in December as it was making me feel worse/no improvement and as I'm due to have surgery soon my consultant agreed I could stop at that one.

I've actually been for my Pre Op this week. All went ok apart from having high blood pressue which for someone who normally has perfect blood pressure is a bit of a worry but the Prostap made me feel anxious (plus when you're told that your blood pressure is high you become a bit anxious as result!) so I'm blaming that. I'm seeing the nurse on Monday to have it checked again anyway.

They did give me a date of next Thursday which I wasn't prepared for, it wasn't that quick last time I waited several weeks.

I've made the decision to bounce that one back partly because I have a trip booked at the end of the month that I've only just paid for, not expecting to go in until March at least, plus it's all non-refundable. And partly because this cold bug is in my ears, nose and chest it doesn't look to be leaving any time soon so I decided it's not worth the risk as I want to be healthy as possible when I go in. It gives me a little bit of time to work on my blood pressure too so I'm waiting on them to give me a new date.

I'm still undecided about my ovaries especially after the hideous experience of Prostap giving me a glimpse into the menopausal world. I don't particularly want to be taking HRT for the next 10 or so years with the added issue of potential supply problems. In all honesty my consultant has told me that there might not be enough healthy Ovary left on either side so it might not be an option anyway.

I think we've decided to leave it as a "see how it goes scenario". If they are healthy enough then she will leave one or both in, if not then they will be taken out. I may change my mind before I go in, I'm being a bit indecisive about it but there will a point where I'm going to have to make the choice I know but that's the one I've settled on at the moment. Takes it out of my hands that way!

In the meantime I will continue to live in my slightly quiet, having bunged up ears is sometimes a god send :), little world and wait on that date.

if you don't mind answering can I just ask how was the overall recovery for you? How long were you off? When could you lift simple things like a kettle etc? I've been given a load of paperwork and even though I pretend to be a full grown adult it was all a bit overwhelming. Apparently making tea and sandwiches is ok to do the first week which is good as I do like my tea!

It's the "exercises" needed, which I try to do but am not religious about, has resulted in me spending too much time on Amazon (which I now hate myself for) and ordering something to "assist" in the exercises before and after. But the general ones look like something I'd do in Pilates (if I'd actually dragged my lazy self there in the last year!)

xxx

[maggiemay39]

Hi there,

I too have a hysterectomy looming. I have suffered with heavy painful periods since age 11, to the extent that I was put on the mini pill at age 14. Over the years no one every mentioned endo to me - I always assumed my painful, heavy periods were "normal for me".

Anyway, I had an elective bi-lateral salpinectomy in January 2018. I was rapidly approaching 40 (May 2018) and knew I didn't want children. When my procedure was being carried out endo was found. Up to that point I had no idea as I had been on the pill for so long and it masked many of the symptoms.

I had to have the coil fitted during that procedure as I was advised my periods would be horrendous and the endo would get worse. I went with the consultant and my gp's suggestion and kept the coil for 14 months but it just wasn't for me. My gp removed it for me in March 2019 and I went back on the pill every day.

I gave this a few months (7) to settle down but I was having irregular bleeding, painful intercourse and bleeding sometimes after intercourse. My daily struggles with endo though are the bloating, hip pain that travels down my leg, pain low down in my pelvis, fatigue and nausea.

None of my symptoms are severe enough for me to take time off work but collectively they are starting to wear me down. I was back with my consultant this month and she has suggested a hysterectomy - but leaving one ovary so I don't go straight into menopause.

My gp changed my pill in November so I am giving this a chance but to be honest the pill is not going to anything for the endo pains in my hip, pelvis etc so I am going to have the hysterectomy in the next few months.

I understand the freaking out - I feel like a bit of a fraud having this procedure done when there are lots of women out there that are so much worse than me. But right now I am unable to sleep a full night due to the hip pain and pelvic pain and over time this is only going to get worse so I want to stop it in its tracks now.

My only advice is go with your gut feeling (pardon the pun!) I don't like taking medications but I find iburpofen and paracetamol together sometimes helps with the pain. Thankfully my pain is never so severe that I need prescription meds.

I hope things work out for you.

xxx

[Random_Brunette in reply to maggiemay39]

Hello,

So sorry I haven't replied sooner. Struck down with a cold bug and it's rendered me incapable of functioning like a human being for nearly a week!

Thank you so much for responding. It's helpful to hear others experiences.

The laparoscopy didn't really help much but that was probably it having to be cut short so there was no time to un-stick anything else. I've been taking Naproxen fairly consistently but I have stopped the last few weeks, partly because I haven't been able to get to the surgery to renew my prescription and partly because I haven't needed anything stronger. It is uncomfortable nearly all of the time but it's been manageable with paracetamol and the odd codeine tablet.

I totally understand the side effects now, especially the fatigue. I couldn't work out why, even after getting a decent nights sleep, I was so tired all the time. That's partly why I felt like a bit of a fraud too. Up until that trip I didn't think there was anything much wrong with me. I began to suspect I might have IBS as I too had bloating, bowel issues and the fatigue but I didn't think I was heading towards the triple whammy!

Although I wasn't at the time I am thankful that I had that illness flare up as I think I would probably still be here none the wiser as to what was wrong with me as I would probably still be putting up with it and trying to deal with the symptoms myself.

xx