OK … considering a hysterectomy at 42

[Perriwinkles]

Right … so … I’ve been in pain all day with day 2 of my period. All my plans for the day had to be cancelled apart from meeting a friend which I powered through.

I’ve had painful periods since my first period. I remember crying at the kitchen table when I was 12 but was told to just deal with it! I took myself to the GP at age 17 and I went on the pill from age 17 to 33 and that calmed it down. Once I came off the pill, slowly but surely it all came back: the intense period pain in my back, abdomen and thighs, severe bloating (I look 5 months pregnant right now, no exaggeration) and fatigue.

I have had normal smears and an ultrasound that only showed ‘functional cysts’ which I’m told are normal. Sex has always been painful in all but the missionary position and I told the doctor this when getting a smear but she didn’t say much. I never got any pleasure out of PiV sex.

Basically … I’ve had it!

I’m so fed up …

I never got to have children and don’t plan to now & have made my peace with that.

Have any of you done this? I’m not in menopause. I still have regular periods despite some spotting before and after my period.

I’m giving a hysterectomy serious consideration as my quality of life is just gone for half the month. I get PMS for at least a week before the period to the point that I can’t trust my own decisions in that time and had post-menstrual depression as a teenager.

Would a GP entertain this? Do you know anyone who has done this? Any info? Thank you x

@Houseofvelour

I can quite understand your decision. There was a high profile singer who went public about how a hysterectomy affected her mental health badly … not really what we want to hear!

Periwinkles, I've known many women who have been so relieved to have a hysterectomy and really well afterwards.

Imagine how wonderful it will be not to have terrible, painful periods!

@Perriwinkles if its the singer that also had a drug problem I think it was deeper than the hysterectomy. She did it as a precaution due to the possibility of getting cancer she didn't have the problems we have. She also had a double mastectomy for the same reason. I think in those circumstances you would grieve for your femininity and loss of identity as a woman along with your fertility. I think a carefully thought out decision based on current problems which have a negative impact on your mental health anyway is totally different.

There really are several long term risks that come from having a hysterectomy . Basically , removal of your uterus opens your body up to huge changes - your intestines will drop down to fill that cavity . Prolapse and atrophy to bladder and vagina are also a possibility - OK this could happen with menopause . Think very carefully as it is not an easy option.

OP, discuss all this with the gynaecologist, then weigh up the pros and cons. If you have ovaries removed they will put you on hormones, I think it is far better to keep them. Of course there is a risk of ovarian cancer, we all risk that, but you can't have bits cut out just in case you might develop cancer, when you probably won't. You can stay under the care of your gynaecologist and have regular check ups.

I copied this from WomensHealth:

"If you keep your ovaries during the hysterectomy, you should not have other menopausal symptoms right away. But you may have symptoms a few years younger than the average age for menopause (52 years). Because your uterus is removed, you no longer have periods and cannot get pregnant."

The entire article is very informative but nothing beats having a good talk with your surgeon, preferably a woman.

Good luck.

Thanks so much. I’ve learned a lot from ye. I guess it’ll help if I know exactly what’s wrong first…

Yes it will Periwinkles. Make sure you are referred to a gynaecologist with a really good reputation, a woman, who will explain everything to you.

Good luck.

Thanks @Maggiesfarm

Hi
I disagree about Zoladex.

I had a mirena for 10 years. It did make my periods manageable. And it slowly got less effective as I got further into menopause. I was breakthrough and having lots of episodes of flash bleeding - which was gushes of fresh red blood. I had vaginal atrophy, I couldn't empty my bladder and then prolapsed front and back.

The cause was the huge size of my uterus pressing on my bladder and bowel. I had horrific constipation which caused a rectocele. And since my surgery I know my uterus was completely stuck fast to my bladder so the weight caused a cystocele.

I had no period pain. The mirena sorted that. I began to get moody with meno but not much.

The gyne put me on Zoladex to shrink my womb - chemical menopause. I had a HRT called Tibolone with it. I felt better than I had done for years with no periods.

Since my surgery, my constipation has completely gone.
My bladder is healing but is a million times better.

I will stay on HRT patches for life. And also vagifem for the atrophy.

The gyne patted my foot after my surgery and said I 100% made the right decision to have a hysterectomy.

I would recommend pro strap or Zoladex with Tibolone for as long as you can get it prior to a hysterectomy.

I declined an ablation because I read they cannot detect cancer in a womb which has had ablation. My Nan had womb cancer so I just wanted my womb gone.

I forgot my point !

My symptoms were still
considered PMDD by the gyne despite not being mood related. We are all different but these symptoms are all caused by an imbalance of hormones.

I had severe impact on my physical well-being caused by an imbalance of hormones.

Ovaries gone. Womb gone. Cervix retained (apparently better to prevent prolapse and said to be better for sexual pleasure - I'm single so couldn't comment)

Surgery via old c sect scar and a mini tummy tuck (gyne words) to tidy up the section overhang. I'm still swollen so can't say whether it was successful.
In the FB hysterectomy sisters
group, those having a vaginal hysterectomy definitely recover quicker than those having an abdominal surgery.

My hormone level is now completely regulated and level on patches. My physical symptoms have completely gone.

https://en.m.wikipedia.org/wiki/Premenstrualdysphoricc_disorder

@MrsMaizel

There really are several long term risks that come from having a hysterectomy . Basically , removal of your uterus opens your body up to huge changes - your intestines will drop down to fill that cavity . Prolapse and atrophy to bladder and vagina are also a possibility - OK this could happen with menopause . Think very carefully as it is not an easy option.

Absolutely. This has been my mums experience. Sounds like endo. Can you afford a private initial consultation and then go back to your gp and insist on a referral? I'm afraid women have to be VERY insistent to get decent care

Thanks @grandmashotdoodlebugs it sounds like you’ve been through the ringer. I’m in the part of the month where I feel normal now. I’m already hoping next period won’t be too bad …

Thanks @Mrs08 it’s exhausting really how we need to advocate for ourselves.

@grandmashotdoodlebugs

Thanks for the PMDD link. I got it as a teenager and it remained undiagnosed. The doc put me on progesterone after two years if intermittent hell. It destroyed my first and best relationship in university & has made it so difficult to be in relationships. I’m on meds for it now at long last but it’s hard not to lament the decades destroyed by my it.

*by it

*of intermittent

Having a total hysterectomy was probably the best decision I've ever made. I'd been bought up to believe that severe period pain was normal and not to complain. It was making me unwell in so many ways and I was diagnosed with things like IBS. I'd learned to adapt to being unwell and in pain.

Decided to have the coil. The gp who did them decided she wanted me to have a scan first. The scan came back with adenomyosis. (Thank you radiographer for spotting that) She referred me to the gynae who was a wonderful lady. Because of other factors she was entirely happy for me to have a hysterectomy.
When she went it, she found I had endo as well, with bowel adhesions and fibroids.
She started me on hrt the day after surgery and I've not looked back. It absolutely transformed me.

What I meant to say, was that I'm really grateful to those three medical professionals who finally spotted and sorted out my issue. I'd hug them all if I could.

@OhYouBadBadKitten

I love your username. I'm glad you got sorted and that you feel better now. I feel so tired, I'm not sure I have the energy for all of this as there's so much to think about! That's great the endo was spotted on a scan.

Hi - I had a full hysterectomy at 50 - as a way to combat my monthly migraines. I had no problem getting one. In fact the NHS specialist seemed eager to do it.

I'm not sure if it cured my headaches and indeed a migraine specialist said it would not help. but over time I get far fewer, but what it did clear was my PMT - I couldn't believe I could be the same person and feel the same moods ALL the time. I had been plagued by constant changes in my state of mind for years which I think in retrospect caused all sorts of secondary problems in my life. Then they were gone.

As I has had everything out I could go on HRT immediately - so I never went through menopause. I did try to come off but felt so awful I went back on.

In general people tend to be quite trusting and passive with medics. I would say get informed and push firmly for what you want. Get on the phone about that appointment and don't let up. Try writing a letter. Letters tend to get taken seriously as they are totted up as official complaints. People who quietly accept what the NHS say get shoved back on the heap. I know they are over loaded - but being passive won't help YOU.

Unfortunately Hysterectomies are unpopular procedures these days due to well founded socio - sexual politics. However I'm glad I did it, even though it felt quite drastic at the time.

In my experience, most doctors will refuse if you are in child-bearing age range, regardless of what you want, even if you are adamant you've never and won't want kids. The fact is, they just tell you to deal with it...tho once you're older they will be more likely. I don't know if being in your 40s will help you on this, maybe.

I do know when I was in my early to mid 30s, with similar issues though some not as severe, I was flat-out told by drs they would, and any dr, would refuse to give me a hysterectomy cuz of my age, unless it was a life/death illness type of emergency surgery...cuz "I might want kids." When I said, I am an adult and know that afterwards, even IF I changed my mind, wouldn't be able to have kids, they refused. I said but it's my body and healthcare!! They don't care. I said I will never have kids, never wanted them, would never be with anyone that would want them, that my periods were affecting me greatly. But nope...must have intact lady parts cuz you are a girl and that's your only value and omg, gasp, what if a MAN (husband, bf, partner) wanted kids, how selfish.

However, I had a snide dr said they could possibly get me approved for one if they spun it as I was having severe mental health disability issues. So great, put up with it, or further be labeled crazy, shrugged off etc. no win either way. I suppose however if you have a lot of money to pay on your own, they'd take your money and do it.

Also, this wasn't happening then, but ffs, if I would've been trans, I could've had the damn internal lady parts cut off in a jiffy! But if you are girl, nope, you MUST keep them til you're too old for a baby cuz that's what SOCIETY wants and feels better from. Further proof your body is not really yours and further proof I think humans are the devil, abusive, controlling jerks. Sorry.

I say it'll be easier the older you get, maybe. But they are gonna fight it if they think you are still capable of having a baby and/or sex, even if you say otherwise and regardless of it being your body.

I'm sure there are some good drs out there, just keep looking. I gave up cuz I would rather die in pain than ever go to a dr except for some things. Never listened to anyway so feels a lost cause and let God heal me (and me doing things) or I just suffer, mostly silently, as society does not like you to talk about pain physical or mental, or if you do it's go take 20pills and shut up anyway. Modern medicine is barbaric and antithesis to health (power and money and torture imo); obviously not all.

I say, keep speaking up. I didn't; gave up cuz of hundreds of poor experiences. I hope your pain and misery eases somehow! It sucks to live in a biological body; maybe we won't have to one day, omg it'd be awesome you wouldn't be programmed to feel pain (physically, at least)! In a few generations that might be an option so at least maybe future generations won't have to deal with it.

Also, the dr that snidely said they could make it seem like it was a severe mental health thing also very pointedly said that it will have to be a man that does the surgery. Like wtf?!

So instead of being like, hey this woman has a terrible time with periods physically and mentally, we should listen to her and respect her medical decisions about her own body...thy basically say no cuz they want me to be forced to have a fertile body and able to have sex in case change mind (adamantly said I never would and it's on me if did anyway) and also implying I'm lying cuz, you know, I showed no "real" diseases and must be lying so let's just further add mental health labels to her. It's like they're saying: so you refuse to be fertile and have sex as a young woman! I'm outraged and offended! So be it, but will discredit and humiliate you forever afterwards and so will every dr cuz it will be in medical chart bible.

Sorry. I think your older age will help you. I'd keep shopping for drs if you are set on doing it. I'm just waiting for natural menopause but that's just me that's given up on drs etc; however, I know others, especially young, get shrugged off as "just deal with it; you're a girl."

And honestly, with all the chemicals and hormone disruptors in the environment, even in last 30years, I think it's made girls/women's period probelms even worse, imo. Women hundreds of years ago weren't breathing, eating, drinking, living in a chemical-toxin-soup-environment.

I'm 48 and have had endometriosis since a teenager....have constantly been refused a hysterectomy so now my lovely dad is going to pay so I can have one done privately....I just need to get the ball rolling!

Thanks for this thread OP! I have a large fibroid that just keeps getting bigger and bigger, I have finished having kids so I want a hysterectomy leaving my ovaries and cervix. I've always had easy and predictable periods but I actually can't wait! I look 5 months pregnant.
It's good to hear other peoples experiences. I hope you get one OP, your suffering sounds horrific.

@rosabug

Thank you. You summed up my life since I was about 15 with this:

what it did clear was my PMT - I couldn't believe I could be the same person and feel the same moods ALL the time. I had been plagued by constant changes in my state of mind for years which I think in retrospect caused all sorts of secondary problems in my life. Then they were gone

It's a good idea to write a letter. I think I will as I have been waiting for an initial appointment with a gynae for over 1.5 years now.

@WinglessSonglessBird

Sorry to hear your experience was so negative. I don't think I've kicked up near enough fuss over this. I too dislike going to doctors and only go when I really have to.