Sex

[dk1136]

Hi all, not been on for a while, hope everyone is as good as they can be, I had sex last night and all today the pain in my left and right groin is agony, right in my pelvis, I keep getting shooting electric shock type pain going down my leg, down below feels so heavy as well. I'm going to the Dr in morning but just wanted a rant, anyone else have this? X

[Dollar1414]

Hi there, painful intercourse was my only symptom, I had my lap five months ago and they excised my endo, pain during sex is still there but not as intense , however I now experience pain more often after sex than I did before my lap and I occasionally get the pains in my legs , usually only in one leg or the other not in both at the same time, hot water bottle on my legs helps with this , no idea why it happens though , I'm also awaiting my appointment Goodluck x

[dk1136 in reply to Dollar1414]

Thank you dollar, I'm awaiting a total hysterectomy, so fingers crossed will be pain free after. Good luck with your app x

[confusedandworried in reply to dk1136]

Hi, would you mind if I ask whether you're having a hysterectomy due to endo or is it another reason? And when you say total hysterectomy do you mean the uterus and cervix only?

The reason why I am asking is because there is still a myth amongst endo sufferers and some medical professionals that hysterectomy cures endo when sadly this is rarely the case. Particularly if endo is not thoroughly excised from other areas that are not the affected organs being removed.

Total Hysterectomy )or removal of the uterus and cervix) is considered a definitive cure for adenomyosis, a disease similar to endo but differs in that it only affects the muscles of the uterus walls. Adenomyosis can have similar symptoms to endo, including painful sex, sciatic pain down the legs and a heavy feeling down below.

Sorry if I have just jumped in on this without knowing the full story but it's one of my bug bears really hearing women being told that a hysterectomy will cure endo as this is now outdated and inaccurate medical advice.

Despite this I know (and was told myself 8 years ago in fact) that women are still being told this even though there is plenty of well documented research published within respected medical journals to confirm hysterectomy is unnecessary!

Best wishes, Jo

[dk1136 in reply to confusedandworried]

I have had hormone injections for 7 months which put me in a false menopause, I was Pain free, I suffer with cysts on my ovaries which hospitalised Ben numerous times, I was seen by my consultant, and I said I want it all out, if I was Pain free for 7 months in a menopause then I should b pain free after a hysterectomy, when I say total hysterectomy, everything is being removed, my womb is currently stuck to my bowel, I cannot walk without my walking stick as the back pain is excruciating and I have shooting pains down my leg, I cannot pick my son up due to back pain and also feeling as though I've ripped something inside.

X

[confusedandworried in reply to dk1136]

I'm so sorry you're in so much pain. This disease is horrid and I am convinced that if it effected men there would be a cure by now or at least better treatment options!

May I ask how old you are and whether you are being seen by a BSGE accredited endo specialist or just a general gynaecologist?

Hysterectomy of course has to be entirely your decision and no doubt not one you have come to without a lot of thought.

However depending on your age you may have to consider HRT given early menopause carries increased risks (eg cardiovascular disease, osteoporosis, early dementia) and HRT is not without its own risks either (eg increased risk of breast cancer). Plus unfortunately there is the potential for HRT to feed existing endo that hasn't been thoroughly excised or indeed contribute to developing further endo given oestrogen plays a role in endo.

Furthermore even after hysterectomy the body excretes small amounts of eostrogen which again can (but not always) feed existing endo or contribute to the development of further endo.

If you do decide hysterectomy is the best option for you then it is really important that you are operated on by a BSGE accredited endo specialist and your endo is thoroughly excised at the same time. Whilst endo can effect the reproductive organs it can also, and often does, effect other areas including the peritoneal lining, bowel, bladder, pouch of douglas, ureters and even in rare cases kidneys, lungs and the brain - all areas general gynaecologists are neither skilled not interested in dealing with. That's why BSGE accredited endo centres were set up nationwide and you have the right to request a referral to anyone of these centres - it doesn't have to be your closest one. Just in case you aren't being seen by such a centre you can find a list of centres at the following website: bsge.org.uk

Thorough excision of endo could also provide the relief you are looking for. But of course as usual with this horrible disease there are no guarantees that either thorough excision or hysterectomy will provide lasting relief as sadly there is no known cure at this stage.

I wish you all the best, x

[dk1136 in reply to confusedandworried]

Hi, it's just a genealogist I've seen, one Dr says I have endo the other says I have undiagnosed pelvic pain I underwent a lap in 13 which is when the gynecologist separated my bowel n my womb but I don't have endorsed???!!!!! , I was Pain free for a week then the pain crept back, I was on hrt while in the false menopause so know all about it, yes the gynecologist was hesitant about my hysterectomy but me and my husband have discussed it and I feel so sure if I was Pain free while in the menopause then I will b pain free after a hysterectomy. I know all the risks Tec I have 2 children a boy and a girl, I am probably going to loose my job due to the amount of time ive had off, the Dr has said I cannot work until my op which I completely agree with as the pain is so bad, I'm 31 by the way. I guess it's a case of watch this space x

[confusedandworried in reply to dk1136]

It might be worth considering seeing a BSGE accredited endo specialist as they will still do the hysterectomy if that's what you want but they will have the added benefit of having the expertise required to excise (ie cut out) any endo found also at the same time reducing the likelihood of symptoms continuing post surgery.

I appreciate you may not feel able nor be in the position to wait for your surgery but good surgery is worth the wait.

For reference I had a total hysterectomy (ie cervix and uterus removed) for adenomyosis and excision

surgery for endo 12 weeks ago. The surgery took a BSGE accredited endo specialist almost 7 hours and the majority of that time was spent meticulously removing my endo. The hysterectomy part took less than an hour. Previous surgery for my endo undertaken by general gynaecologists only took a maximum of 2 hours and they used a laser to burn away my endo. Burning away severe, deeply infiltrating endo is ineffective as research shows it only removes the top of endo. It does not remove it from the root meaning, much like a weed, it grows back. Excision surgery is now considered the gold standard of treatment within the field of endo.

All surgery carries risks but abdominal surgery also carries the risk of adhesions. Adhesions can cause pain and issues in themselves. Therefore it's really important for endo sufferers to

limit the

number of surgeries they have and one way of doing this is to ensure they have the best excision surgery available to them in the first instance.

Best wishes, Jo x

[Dollar1414 in reply to dk1136]

Hope all goes well , like other users have said, the myth that having a hysterectomy will 'cure' endo and you will have no pain after is sadly untrue for some however is great for others, and also as ive found out from my own personal experience, pregnancy by no means takes away endo pain for everyone , this is another complete myth , I was told because I had pain during sex during my pregnancy And the pain was just as bad i couldn't have endo - wrong. I think specialist gynes are the only way forward and I would get reffered to one if you arnt allready, hopefully you will find a solution x

[Sam341]

I get this every time. It goes away after a day or two with me. I normally find the day after is the sorest.

[mikkid88]

Most of the time after I have this or crippling period like pains that put me on my knees it's horrible. I'm sorry you're having to go through it now. Since my doctor put me on amitriptyline the pain hasn't been too bad xx

[dk1136 in reply to mikkid88]

Ive been on amytriptaline aswell x

[mikkid88 in reply to dk1136]

Do you feel like it's helping or not really? The only other thing I do is sit in a hot bath. Let us know what your gp says hun xx

[dk1136 in reply to mikkid88]

No I was on it for migraines and to help me sleep, x

[Marr_steph1352011 in reply to dk1136]

Sorry to jump in but can I ask the doctor has put you in this medication for pain during and after sex?

[Tboag]

Hi, I also get this, for a few days, feels like bad period pains/labour pains, constant pain ache, leg pain/ache, and in pelvic area, not much pain during sex but enough that I do t enjoy it,

Ive got endo all excised, Adenomyosis and a tilted uterus and am having a hysterectomy in 38 days (on countdown lol) I can't wait, I was offered the temp menopause, but because he wants to leave my overies in I decided against the injections as I feel it's 2 different things, temp menopause being 1 and uterus and cervix and tubes out with non menapause being 2,

I can completely understand you wanting to try a hysterectomy, I think it gets to a point where we would just try anything if it could help,

I'm seeing a endo and lap specialist but he and the hospital are not on the list, but coz I have adeno, it's a Defo cure for that one,

My plan is that if I'm still in pain after or if it every returns I will then see a bsge specialist,

Do you have a date for your op yet?.

Good luck, xxx

[dk1136 in reply to Tboag]

I agree we would do anything for the pain, glad you understand, wow 38 days till your op, I was told end of July beginning of August, I think I'm same as you if the pain does come back then I'll c a specialist. Keep me updated with your op etc, I'll b asking you all sort of questions, you can be my guide lol. X

[texar23]

I was having the same pains in 2013. I found out that I had a fluids filled cyst on my left ovary. Still I suffer with lower back pain on the left side that is unexplainable. Have your doctor to check for cyst although some are noncancerous they still are painful.

Texar23

[dk1136 in reply to texar23]

I've had cysts before which have hospitalized me. X

[Jadejennnxo]

I'm going to try to have another child for my full hysterectomy. I pray for you, I'm 19 years old and have had endometrosis since 2012 and they confirmed it this April 10th 2015 I use to be crying in emergency every night my left side of vagina/groin / hip hurt so much especially on my period I got pregnant recently within these 4 years they call my endometrosis clear cysts but it's everywhere on my uterus and all over it hurts.. All day everyday it hurts to have sex, walk.. Do anything .. Is this your pain aswell?

[dk1136 in reply to Jadejennnxo]

Yep both sides of my pelvis deep inside, lower back pain, have to use a walking stick, shooting pains down my legs and also down below sometimes, im on 10mg morphine patches, hope the future is better for you. Xx anytime you want to talk just message me xx

[Jadejennnxo]

I also have mad shooting pain from my vagina / groin to my bottom left leg daily ........ prayers

[buttercup10]

I suffer with pain after sex also even just a orgasm without any penetration. I also get the heaviness feeling some girls have mentioned after sex and during my period. xx