I was just diagnosis today with endometiosis, but i seen no treatment option ahead just the marina coil. What happens now? Is this it?

I was diagnoised by a gynogologis today as having endometriosis, i have been told to have the marina coil fitted to try and reduce pain and painful periods. What about the painful sex? I am 20 years old i'm not thinking about a family yet but i would really like the option when the time is right but the maria coil was the only suggestion of 'treatment' right now? I would really like to know what is going on inside me, and if and how badly my fertility is affect. I have to try this first before i can ask for a laproscopy, its a big decision i know but i just want to know the severity. What happens now? Do i just keep going on with this cycle of pain, bloating, back pain, bowel problems and time off work ? Can someone inform me please, i'm at a loss, I've been waiting for this diagnosis for over a year and i still feel at a loss. I'm not so worried about the discomfort i get but the chance that each day i could be less and less likely to ever conceive. I don't feel very informed or secure right now, or am i just being pathetic.. i dont know. I feel at a loss. What is the next step? Any info or advice would be so helpful and gratefully received. I've sort of know the last year this is what i had but after a year of waiting on appointments at the hospital and numerous swabs just to make sure i wasn't a 20 year old with an STI ( which seemed to be like look on many doctors faces) I finanly have an answer but now i'm more at a loss than ever. The painful sex, how do you deal with that? I can tell my boyfriend is scared at times to have sex... i'm so angry. Does it ever go away? Thank you, Amanda.

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  • No it doesn't go away, it has to be surgically removed, that's the only option for endo itself. however rthe side effects of endo can be treated.

    Certinly for heavy painful periods the Mirena is fntastic in many of us at stopping your periods (and the pain and bloating that comes with them) but it does take quite some time to kick in to work properly. 4-6 months usually, but after that, no periods for the rest of 5 years should you want to leave it in there. Or it can be removed if you are ready to start trying to conceive.

    Painful sex is another matter entirely, and the Mirena will not have any impact on that side of things. There are several discussions on this topic already and various things offered as ways to help, from pain killers, to stretching exercises, to surgery. And none of them are guaranteed to sort you out. Stretching and surgery can acually make the situation worse by aggravating what is already damaged, causing adhesions to grow, gluey scar tissue which wraps itself around the outside of the vagina and cervix restricting movement.

    Many women with endo sex pain just stop having penetrative sex and try other ways to enjoy intimacy that do not hurt.

    You cannot be diagnosed with endo without having a lap op to see it, If you have not had surgery you have suspected endo, and from your symptoms it does sound like it.

    But before you have any major medical treatments like hormone treatments then you should have a lap op first to see what the extent of the problem is and how deep it has grown and what the situation is regards adhesions (which are probably why sex is painful rather than endo)

    Meanwhile if you can tolerate having the Mirena put in and witing for a few more periods till it works, you should find yourself feeling much better without the hassle of periods.

    Use the search box aat the top right of this page to hunt for previous discussions of painful sex and read through the various answers. There is no fool proof way to resolve that side of things. It is trial and error.

  • Thats what i thought that you need to have the lap op to diagnose it! :O The consultant said in light of my symptoms and history she could confidently say it was. Whats concerning me as how bad it is, you cant tell without one and i'd rather know. I have been told first to try the marina coil and see how my pain goes but that isn't chancing the underlying fact of what is happening inside... does it progressively get worse? The consultant told be that 50% of the time in a woman with endo you might not always see anything by doing the lap so from what i've told them so they assume it to do endo and are going with that. I just worry what is going on inside and how bad things are and will get.

    The painful periods is a major problem, hoping the marina coil will help its sounding good.

    Will definitely have a look into the way to try and reduce the pain in sex. Was told not to take any hormones like the pill while i was waiting for a definitive answer as to what was going on but now the consult has advised me to get the coil, heres hoping.

    Thank you, that was all helpful. Bit calmer now just after a long wait i felt like i had little info or guidance for the consultant this has helped and is such a good website as well.

  • Reading this was like reading something I'd written. I'm goog through the same thing except it has now been 7months since my first gyno appointment and I've tried everything they have thrown at me, I've had every pill there is before my first gyno appointment, I've had mefanamic acid, naproxen, tranexamic acid, the contraceptive injection alone and with microgynon since my gyno appointment and absolutely nothing has made me well enough to have a whole month where I feel well.

    I suggest that you don't lie down and take it like I have been stupid enough to do. Everytime I get another treatment option offered to me I take it hoping it means I will finally feel well enough to go out and have some fun but everytime I'm let down and am still bed ridden for at least 2 days a month.

    I finally have a new doctor who has supported me and I'm now waiting for an appointment for a lap and as strange as this may sound, I'm really excited for it so I can finally know if it actually is endometriosis and maybe get something done about it and get my life back as best as possible.

    Good luck with everything x

  • Hi Amanda,

    Don't let the doctors fob you off with getting you to try other things first.

    In my opinion it is in your best interest to have the laparoscopy in order to diagnose the state of any endometriosis you have or any other problems that they cannot know about without doing the procedure. If you have endometriosis then they can treat it there and then and you will hopefully benefit from that. Then once you have the results, you can make informed decisions of what preventative measures you can take for the future and things you can do to help eg the marina coil.

    Doctors say to try this and that first because it is what the NHS states they have to do, but you need to be assertive and push to have what you want as ultimately it is your health.

    I was in the same situation and had doctors stating to try the pill and try mefanamic acid etc and those things are all well and good but not when they could be masking what is really there. I pushed for surgery and it was lucky i did as i had endometriosis on both ovaries, the stomach and multiple polyps. The surgeon said that if it had been left much longer there would have been a high chance that the ovaries would have been severely damaged and ultimately removed.

    I therefore recommend for you to not take the risk and push to have the surgery so that you can make informed decisions.

    I hope this helps and all the best,

    Kayleigh

  • Actually, try having both done at the same time.

    Lap op and Mirena inserted.

    As the inserting of Mirena is more than a bit painful for endo ladies, ask/push/beg for the lap op, AND at that time while you are under general anaesthetic, have the Mirena installed too, so you don't feel a thing.

    It's by far the very best way to have it put in, because they have the right equipment in the operating theatre to make sure it goes in the right place and you don't know anything about it happening. No pains no stress, job done.

    If you find sex painful then having the mirena put in without anaesthetic will probably be more than 'just a little sore' to be honest. It could be agonising.

    You could say the gynaecologist that yes you will accept the Mirena, provided that it is done at the same time as a lap to diagnose the extent of the endo, and any adhesions found around the Vagina, Cervix, POD (pouch of douglas) are cut back to see if that helps you with less painful sex. It doesn't cure it, but might help a lot in the short term.

    It is more than just a cosmetic operation, you do need to be diagnosed properly. Even if there is a waiting list. So the more procedures you need doing during surgery the more likely you are to get surgery, because it can be justified as a good use of NHS resources.

  • I couldn't agree more with you,Impatient , this is what I did. And have since had my second Mirena under anaesthetic , during this they did a D&C . Brilliant. I love my consultant at Liverpool Women's !

  • I would definitely push harder for a lap before they fit the mirena - if you have a lap whilst a mirena coil is in or within a few months of it being removed, it will make it much harder to see the endo so you may get no diagnosis or they may think its milder than it is and be unable to remove it all.

    My first lap at 21 was "clear" because they didn't really look - I wasn't diagnosed until my second lap. Being on hormonal treatments at the time of or within a few months of a lap means they don't get an accurate impression.

    They are probably right and it probably is endo - if that's the case, they need to start treating it ASAP. Mirena coils can help but they can also cause very severe pain and bleeding especially for the first six months. I finally agreed to have one fitted in August and I had severe contractions every day for five months. I'm still waiting to have it removed. Lots of women go through this. Also, you're only 20 and have no kids and find sex painful so I'm surprised they're considering inserting one when you're awake - personally I wouldn't agree to this.

    Have you tried the pill for your symptoms? I've been on every hormonal treatment going and the pill is the only thing I'll touch once this coil is out, and at least you can stop and change it when you choose to, and you can run three packs together so you have less periods which means the endo will bleed and spread less.

    I hope you can get some answers soon.

    X

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