how do you deal with your endometriosis?
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Topic: how do you deal with your endometriosis?
Posted By: Mintyfresh
Subject: how do you deal with your endometriosis?
Date Posted: 18 April 2011 at 8:47pm
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Hi Ladies,
I'm new here - hope this is in the right place! There were some infertility and health type boards but none of them seemed to suit endo. I was wondering how other ladies here with endo deal with it day to day, and has it affected your fertility. I had my first lap in February 2011, after 14 years of crippling pain which resulted in a lot of missed days of school, uni and work! I also have considerable back problems, fatigue and IBS, which evidently are associated with endo! I had an endometrioma in one ovary, it wasn't huge but it was substantial, my doctor also mentioned popping a few little blister like cysts (sounds like PCOS to me) but she seems to think I don't have PCOS, so quite confused about that one. My doctors advice was to either start TTC straight after the op, or to control my endo with a hormone supplement of progestergone. So we ended up deciding to control it with a Mirena. It's been fairly awesome since - I've had three periods, and although they've been crampy, they definitely haven't been crippling :) but now I wonder - when I have it removed when we decide to start ttc, will my periods go back to being abnormal, heavy, and short luteal phase like they were pre-op? ------------- http://lilypie.com" rel="nofollow"> 
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Replies:
Posted By: _H_
Date Posted: 18 April 2011 at 9:15pm
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My periods are actually better since I got my mirena out. I have had it out since Aug/Sep 2009 and my periods are only just starting to became a problem again- the last one I had crippling pain but took strong drugs which meant i could at least stay at work. They are also a lot shorter only 3days now instead of 5-7days. I had my mirena in for 3 years and never had a period when I had it in
I find that going to the gym helps even though its the last thing I want to do! Plus its always nice to have a hot shower after |
Posted By: Hopes
Date Posted: 18 April 2011 at 9:17pm
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Didn't want to read and run - although I'm not in the same boat as you, I have had an op for endo. From my experiance, periods on the pill were great, it wasn't until I came off it with the intent of having a baby that they got bad. Probably not what you wanted to hear - but then again, that wasn't after an op or anything, I was just on the pill for about seven years.
I can't really answer the post-op question, because I got pregnant straight away after mine. But my first after having a baby was pretty dreadful; I'm hoping that was just my body getting back into the swing of things rather than the endo having come back. And it is possible to have cysts on your ovaries without having PCOS, as weird as that sounds! Hopefully your Drs right, you don't need another complication in the mix! -------------   
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Posted By: mummy_becks
Date Posted: 19 April 2011 at 10:57am
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Honestly - I suck it up and deal with it. I have a Mirena in and still get pain. I have crippling endo over almost everything in there and I have PCOS both the cysts and the syndrome. I suffer in silence most days and drug myself and every now and then have a little moan about it. I have finished having children and am now counting down to turning 30 so I can have a radical hystorectomy. I could have yet another laproscopy, but what is it going to do, give me a false sense of everything is ok and then it all grow back more. I got pregnant with my first child 2 months after my 1st laproscopy and 15 months after my 2nd. If you are keen on starting a family don't put of trying to conceive after having the laproscopy get in there and try as this is meant to be the best time to do it. |
Posted By: Mintyfresh
Date Posted: 19 April 2011 at 11:13pm
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Thanks for your replies guys :)
Mummy_becks - my gyno told me that the mirena should slow, or even halt endo growth, so basically my endo is being held at bay until we're ready to try. I'd love to start trying now, but now isn't the time unfortunately. Halted - good call with the gym, a girl I know mentioned the gym really helps her so I'll give that a go once I start my new job! (Health allowance ftw!) ------------- http://lilypie.com" rel="nofollow">
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Posted By: Bexee
Date Posted: 20 April 2011 at 9:27am
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I had two laparoscopies and removals - one about eight years ago and another about three. Both times I was told if we wanted kids to try straight away but the time wasn't right.
I found the best way of controlling my endo was to be on the pill constantly and skip the sugar pills so I didn't get periods (on the doctor's advice). It meant I only got a period every eight or nine months or so. When we did start TTC I was given the option of another laproscopy if we didn't have any luck in a year but thankfully I managed to conceive DS (now 20 months) within a couple of months. Since having him, the endo hasn't been nearly as bad. Hope this helps. |
Posted By: mummy_becks
Date Posted: 21 April 2011 at 7:08am
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The mirena should usually do that but it doesn't work the same for everyone. I also agree exercise does help, I do a lot in a short amount of time when I go to the gym, it isn't easy exercise I do either.
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Posted By: fletch
Date Posted: 03 May 2011 at 6:09pm
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I am getting the mirena in next week - they said it should help and now I am not so sure. My little one is three and a half months and my period came back asap and with breast feeding pain killers are out. I should really get back to the ex-cerise - but ya just get sooo tired. We tired for two years and now have to start thinking about the next. I was on progestergone for a while and it didn't go so well ...but heard it does for others.
A friend said you can feel a mirena - is this true?? Endo is very different for everyone and very trial and error to see what works for you - which is a difficult journey. ------------- http://lilypie.com"> 
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Posted By: Guest_45692
Date Posted: 06 May 2011 at 7:18am
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My endometriosis is caused by ovarian cysts that recur and continue to rupture damaging the surrounding tissue causing it to scar. i have had 2 surgeries for this and am at risk for ectopic pregnancies and possibly eventually having a hysterectomy to deal with the pain. I am not sure if this helps at all considering that mine is not caused or diagnosed as an auto immune disease.
treatment for menopause http://www.womenhealthzone.com/menopause/treatment-for-menopause-cognitive-behavioral-therapy-cbt/ - http://www.womenhealthzone.com/menopause/treatment-for-menopause-cognitive-behavioral-therapy-cbt/ |
Posted By: Mucky_Tiger
Date Posted: 06 May 2011 at 9:00pm
I dont have endo I have PCOS (all the symptoms but no cysts) and what the Dr's can best describe as extreme oligomenorrhagiac(very heavy irregular) periods. so i now have an mirena IUD. I used to always get wicked cramps that would make me swear and double over, but now every time my uterus cramps my tummy literally cramps and it feels like my IUD is stabbing out the 2 sides of my uterus. very painful, no amount of muscle relaxants and anti-inflammatory's make it better (but taking eveing primrose oil has lessen'd my cramps - go figure)...but if im not cramping cos im having AF i cant feel it. |
fletch wrote:Posted By: mummy_becks
Date Posted: 07 May 2011 at 11:00am
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I can't feel my Mirena, but I can feel the strings when I am in the bath. It is soemthing you should do to make sure you can still feel them or you can pay to get your dr to do the same thing. |
Posted By: Nay
Date Posted: 09 May 2011 at 6:26pm
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Hmm i wish whether or not i knew... My last period before getting pregnant the doctor thought i might have endo of the bowel... Wont be a while before i can see whats up with my lady bits. My periods were chronic and a change in pill switched it from a seven day bleed fest to a 3 day one.. all with diarrhea the first couple of days.. thats why the doc thought it might be endo of the bowel..
REading about all these "womans" problems in the posts makes me grateful..and wish i was a boy. One of my good friends has PCOS and endo and is considering hysterectomy and she is only 23!! After baby and they know whats up with me.. im going to go on the jadelle implant. Sounds so much better than the other hormone stuff ------------- http://lilypie.com"> 
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Posted By: mummy_becks
Date Posted: 13 May 2011 at 1:36pm
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Nay, The Jadelle is like the pill, doesn't suit everyone. I know of someone who had constant bleeding while she had it in. |
Posted By: busymum
Date Posted: 17 May 2011 at 3:22pm
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At one stage I was suspected of having endo. Thankfully it was ruled out but the biggest advice I got back then was (1) nurofen is the best pain relief and (2) try a wheat-free or gluten-free diet to help manage the symptoms.
In my case I tried a gluten-free diet and then they found out I had coeliacs instead of endo LOL -------------  |