Hysterectomy at 22?: hi, im 22, I've been... - Endometriosis UK

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Hysterectomy at 22?

KayweeJade profile image
10 Replies

hi, im 22, I've been diagnosed with pcos for 6 years and endo for 4 years. I have had laparoscopy 7 times. I'm on strong pain relief and use heat pads, hot water bottles, tried creams ect.. I've ended up having to move back in with family and gave up my job as a carer as the pain is too severe. I've gotten to the point where i'm seriously considering having a hysterectomy. I just want to be 22. I don't want to have to have help to get out of bed some days or to be stuck in the bath because i physically cant lift myself out. If i knew 100% that a hysterectomy would completely make me pain free i would get one within a heartbeat, but i haven't tried to conceive so i doubt the doctors would even consider it. I guess i'm just wondering if anyone has any suggestions or advice.

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KayweeJade profile image
KayweeJade
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Lovisa profile image
Lovisa

Have you thought about mirena coil? or any of the pills or injections that you put you into a temporary menopause? Some women would recommend a TENS machine for pain.

Bevy1667 profile image
Bevy1667

Hysterectomy isnt a cure sweetheart I've researched this for years there a quite a few docs looking into this horrible disease so hopefully one of them will come up with something do plenty of research before you go through with anything good luck xx

kelbel profile image
kelbel

Hi I totally understand with regards to having enough, I had a hysterectomy last February 2016, as I had tried all other procedures and treatments but nothing helped. I used to bleed 24/7, 365 days a year, even when they put me into a "fake menopause " I still continually bled.

Mentally and emotionally I was broken. .. however 22 is very young, I'm 40. I had to fight to have mine, as I was still child bearing age they didn't want me to have it done, also because I don't have any children either.

It wasn't an easy decision to make, believe me, as all I had ever wanted was children!, but I had gotten so low, lost all but one friend as no one understood why I kept cancelling on them or wouldn't go out, had no confidence, was depressed and had contemplated suicide, I felt that this was my only option.

Thankfully, it was the BEST decision I could have ever made. I have no more pain or bleeding, and no pain when making love, as before (if we ever did make love) it was agony! I feel as though I am now "Kelly " once again! I had lost who I was as I was so obsessed with just trying to get through each day life was passing me by!...

It's a massive decision and one only you can make, but if you feel as bad as you do then it may be worth seriously considering. Maybe you can freeze some eggs, that way if you go ahead with the hysterectomy you could still have children!?.. talk to your consultant, get as much information as possible. It's a massive operation with no guarantee that things will be perfect after, but they will certainly be better!

If you ever do go through a hysterectomy and wanted to talk to someone who understands please feel free to PM me, I'd be happy to go through what to expect .

Sending much love your way.

Kelly xx

kelbel profile image
kelbel

*Sorry should have said, freeze eggs so that you could still have a child with a surrogate.*

Good luck xx

Marcia71 profile image
Marcia71

Hi

As someone that had a hysterectomy and no relief from pain I'd say please look into other options first but most importantly get to a BSGE clinic so that you have the best advice and treatment.

If you do have a hysterectomy you must have all endometriosis excised at the same time else you'll have no relief and as you've had treatment before you really should see a specialist to make sure it's done as thoroughly as it can be. They will also know more about treatment options and how to protect your fertility as long as possible.

Your GP can refer you to a BSGE clinic and their website shows all centres around the country - you can go to whichever you wish to.

NW248 profile image
NW248

I can't help advise from a medical point of view as to alternatives or whether a hysterectomy would help. But I was 47 before I got diagnosed, endo had blighted my entire life. I never had the chance to have kids because I was ill so much of the time, it was all I could do to earn money and cope with housework etc. I had too little energy for much of a social life so never managed to get into a serious relationship. So if you're worried about not being able to have children, I would point out that the illness might prevent that anyway. If I had been diagnosed younger, and even if I went for a hysterectomy, I would have had children, because I would have fostered or adopted. I have now missed the opportunity to do that.

shazlovesevo profile image
shazlovesevo

Hey hun,

I'm 21 & on prostap injections, my consultant has said that if the injections work for me (which they are) then I can have a hysterectomy.

I was dreading speaking about it as I thought they would say no but my consultant saI'd if it's gonna give me a better quality of life then that's what he will do.

Have a word hunni, maybe write some questions down to take with you?xxx

shazlovesevo profile image
shazlovesevo in reply toshazlovesevo

I'd also like to add I've tried all other options, surgery, pill, mirena coil, prostap is the only thing that has helped me & it's a medically induced menopause.

They are gonna do another lap on me then speak about hysterectomy. X

Hussain29 profile image
Hussain29

Hi totally understand how you feel have been the same for 20 years had 9 laproscopy but the endometriosis and cyst keep coming back. Have recently had a full hysterectomy and am sorry to say the full hysterectomy will get rid of cysts but there is no guarantee that the endometriosis will go. I once again am having the same pain as before the hysterectomy back pain,pain in legs shoulder feeling bloated bowel and bladder problems and have been told it could be the endometriosis. So basically even after a full hysterectomy there's a chance the endometriosis will come back. Have you tried the depo injections that did help me with the pain and bleeding for a good few years.

Nickster20 profile image
Nickster20

Hi can I ask of those who have had the hysterectomy, have you had your ovaries removed as well?

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