Feeling Misunderstood :/

I'm only 21 and have suspected endo they're finally going to decide whether to give me a lap in October after a year and half of treating me like a guinea pig poking and prodding me and trying zoladex which i had a reaction too, the coil which failed to be inserted after I almost passed out from pain and now cerazette pill which hasn't made an ounce of difference apart from having no periods, I'm really starting to feel depressed about the whole thing and what's worse is no one understands, my mum and dad just tell me to stop moaning it can't be that bad, I work as a chef in a kitchen with 5 men and they don't have a clue and my boyfriend try's to be supportive but he just doesn't get how much it affects me and how I feel, I'm constantly tired even after a good nights sleep and even though I've told my boss I have this condition I'm still expected to work 12 hour shifts 5/6 days a week, I have the worst mood swings I'm happy one minute and feel close to tears the next, I get excruciating back pain and I'm almost unable to have any intimacy any more with my boyfriend, sex went a while ago as it got too painful and makes me bleed and now foreplay is starting to hurt just as much. I feel like a freak as non of my friends or family are like this and everyone just treats me like I'm being some drama queen and doesn't realise how down its getting me, advice please ladies? X

5 Replies

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  • A giant cyber hug to you.

    Yes it certainly does show every indication of being endo and adhesions.

    adhesions are scar tissue that grows on wounds and endo cause wounds inside, which then grow adhesions.

    These adhesion don't know when to stop growing, they grow inside the cervix and outside the cervix and vagina and heavy periods make the inside ones worse.

    These adhesions are like a really heavy duty sticking plater around the outside of the vagina.

    Having speculum put in, or having sex, stretches the adhesions to breaking point and they tear and that hurts a lot and that causes more wounds which causes more adhesions.

    Unfortunately there is no cure for that. They can be cut back in surgery but they will grow again.

    It means that the act of stretching the vaginal walls is literally like tearing off a super strong plaster on your arm and it takes the skin with it.

    So no surprise whatsoever that the mirena insertion failed because it was too painful. Having Smears taken will do the same thing. OUCH on a grand scale...and for several days afterwards.

    I am pleased you are getting the op. And I would HIGHLY recommend you use that op (whatever they find) to get the mirena put in properly while you are knocked out cold with general anaesthetic and you have hospital strength pain relief (morphine) for a day or two afterwards.

    It is the ideal time to get it put it and it can make such a huge difference to the endo and to your day to day quality of living.

    It does take around 5 month to get going but can make such an astonishing difference to the quality of life you have, it is worth it, worth putting up with a few niggles and twinges for a few month till it starts working.

    When it does, no periods, no period pains, level moods, no expensive tampons and towels, no panic about booking holidays or events because you have no idea how bad your period will be, no knocking back packets of pain killers either. It is liberating. it isn't perfect, but it can improve thing alot.

    As for sex pain thing, there really is no long term solution. Many of us gave up bothering...as men would if they had a feeling their testicals were being ripped off each time they had sex.

    Others stop the penetrative sex and use other ways to have an intimate relationship, oral sex, and other more imaginative ways to have a bit o fun. Some found taking pain killers before getting intimate was enough, but for others the pain is too severe and long lasting afterwards for painkillers to be of any help.

    Even with mirena installed and fully working the sex pain issue remains. Nothing stops adhesions growing because they are the body's natural defence method of protecting itself from future harm we do need scarring and scar tissue, we just don't need quite so much of it.

    So there is good and bad news for you to get your head around.

    Even if they find endo, and if they remove endo by cutting it away or lasering the shallow endo away, it can keep on coming back and much more likely to come back if you are having periods still, so the main post operation ways to control endo are to control your periods or stop them from happening. Stopping the chances of back flow of period blood up the fallopian tubes instead of escaping through the vagina where it is meant to escape from.

    Surgery does not necessarily stop you having pain, it can reduce the pains a lot, but the main aim to to curb the endo from causing more pain in the future or slowing down that process, same with the post operation methods of stopping periods.

    If you are diagnosed with endo (and I suspect you will be- given your catalogue of symptoms) then you do at least have it in writing to show to your employer, and family that you are telling the truth, that you do have an incurable chronic and painful illness.

    And hopefully with mirena in and working you will also find you are in a much better position to cope with the endo, without having the periods and period pain issues going on too.

    I come from a farming family and the men folk who have worked with livestock all their lives knew exactly what I was talking about when i was confirmed with endo.

    You see pigs get endo, just like women do, and it is a dreadful disease seen in sows, and farmers know all about how it impacts their livestock, so the best sympathy i got was from the menfolk who were farmers. Regular male colleagues if they don't have a wife, sister, mother or daughter with endo, haven't got a clue.

    There are some great info leaflets for employers, not only on endometriosisUK which runs this forum but also just by googling for advice cards which other endo patients have created.

    Print them off and hand them to your co-workers when you get back to work after the op.

    Hopefully they will have better understanding of the disease.

    Also if you get put on GnRH drug therapy to induce menopause after the operation, then you need to tellcolleagues you are on a chemo drug course for a few months. They are cancer drugs and you might need time off to cope with the side effects, and by expaining to them you are on chemo you should get handled by your employer in a more sympathetic and flexible way. Generally speaking most people know that chemo has grim side effects (there are lots of different kinds of cancer treatments) and it is well known they are tough to get through. Even though GnRH is a hormone treatment rather than full blown chemo, it is still a chemo drug to all intents and purposes.

    Best of Luck for the big op and definitely give serious thought to using that op to get the mirena put in properly.

  • Bless you hun, You are definitely not a drama queen, we all understand your pain. I posted a little story to another endo sufferer the other day. My doctor told me when I was first diagnosed and didn't understand what endo was and why all the pain, ' the pains like a man having his testicle squeezed, go home and grab your husband testicle squeeze it and say that is how it feels for me all day every single day dear! I thought it was great and it makes me giggle when I think about it. So you can now see that the pain is bad as when men are hit in their testicles they drop like flies for a while, and we have to deal with that pain all day every day! We are here to listen and support you. Hope you are feeling okay today. Take care X.

  • Thanks for the advice ladies it's always nice to know I'm not alone :) and I might try your testicle experiment haha see how they enjoy the pain, I've spoke to my mum she's finally listened to me and said if I'm not happy with my consultants answer in October she'll pay for me to go private and have it diagnosed properly :) xxx

  • It's a fab experiment to try! Glad your mum now understands and has listened to you. Take care X.

  • Yep I have an endo experiment I'd deaaarly love to try with my boyfriend. People do not relate because they don't know how it feels.

    1. Keep your boyfriend up for at least 24-30 hours straight with no sleep. Preferably with lots of cleaning, vacuming, bending and picking stuff up off the floor.

    2. Go to paintball with him. Let a couple of shots at his abdomen area.

    3. Stick a giant pad on his underwear- squirt on some globs of glycerin jelly with red food coloring.

    4. Go to a party or social event. Put some laxatives in his drink. Also randomly taser his balls.

    5. Immediately leave the party with him wanting to use the loo. . . . .too bad! Go grocery shopping with him. He must carry all the bags. Take a couple flights of stairs too.

    6. When he becomes desperate for pain killers such as Advil/Tylenol don't give him any. Give him the stink eye and say . . .I think you should go to rehab. This must be all in your head.

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