Kind of rant - endo (and possibly TMI)
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Topic: Kind of rant - endo (and possibly TMI)
Posted By: minik8e
Subject: Kind of rant - endo (and possibly TMI)
Date Posted: 21 April 2008 at 10:21am
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I'm sorry, I just need to get it out or I'm going to lose the plot.
I am in such a huge deal of pain that I'm in tears. It affects my bowel movements. I sit here and have to try so darned hard not to cry. I have gone through 2 super tampons in 3 and a half hours. I have a doctor's appointment at 3pm to try and sort something out for management. Am I going to have to go through this every fricking month???? I just can't handle it, I'm a flipping MESS!!! And I'm going home from work for the second month in a row because of it, and it just completely and utterly bites. I am over it. 
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Replies:
Posted By: ginger
Date Posted: 21 April 2008 at 10:30am
 Kate - Endo is really hard to manage and cope with. I know there are days where I am bloated and literally gushing blood ( ) and I hurt from the top of my head to my toes, and I'm sitting in my office trying hard not to just curl in a ball and cry. It does't even really help much I find if you're at home, because you're still miserable - it just means you can manage some things better.
I hope your Dr can give you some suggestions though that are helpful - have you had surgery for your endo? ------------- Cuinn Lachlan 23.1.09 - 22:00 Antonia Helene 4.8.11 - 09:41 |
Posted By: minik8e
Date Posted: 21 April 2008 at 10:35am
| Not to remove it no, well, not that I'm aware of. Only the lap when they told me that I had it nearly a year ago, however the pain has got so bad it's almost unbearable which is significantly worse than before I had the lap. At least at home I can curl into a ball with a wheat bag and not feel so bad about spending hours on the loo (sorry TMI). I sit here at work and have to try so hard not to cry, not so good when you need to concentrate. I mean, I have pain most of the month, but when AF actually arrives....it makes me want to tell the doctor to take the whole lot out and to he** with kids or whatever, I don't want to live like this. |
Posted By: kebakat
Date Posted: 21 April 2008 at 10:41am
| I'd be heading to the docs and finding out when the endo can be removed and until that time what he can do for you to manage the pain and other side effects from it. |
Posted By: ginger
Date Posted: 21 April 2008 at 10:56am
I'm staggered they didn't take it out while they were in there Kate  Did they tell you what grade endo it is and where it's centered? (ie. perhaps they didn't take it out because they need a bowel specialist or something like that) You need to get it out asap - talk to your Dr about your options for excision. Your symptoms etc may not completely disappear, but it's better than 'living' as you are!
When did you have the lap? ------------- Cuinn Lachlan 23.1.09 - 22:00 Antonia Helene 4.8.11 - 09:41 |
Posted By: Mama2two
Date Posted: 21 April 2008 at 11:08am
I am stunned that they didn't remove during your Lap too! I second what Ginger has said, demand that it is removed asap! It's not fair that you should have to live like this Big Hugs from a fellow sufferer ------------- http://lilypie.com"> 
http://lilypie.com"> 
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Posted By: minik8e
Date Posted: 21 April 2008 at 11:10am
I didn't really get told jack all after my op - they did a number of things while they were in there, including checking a large cyst on one of my ovaries (which also feels like it has come back, and possibly another on my left ovary) and LLETZ treatment, and check that the miscarriage I had was complete. The only thing they told me is to have children now, or at least as soon as I could, because I'm most likely going to have to have it all out afterwards. No pressure there  LOL Thankfully I have a very understanding manager and colleagues. And DP and I are planning to TTC at the end of the year....but that's still 8 months away.
I have an appt at 3.15pm this afternoon at the doctor. I'm at home now, I kind of lost it at work and just had to leave, in tears and ready to throw myself on the floor and scream and shout and have a fullblown temper tantrum. ETA: I am sitting here at home shaking, I am so friggin mad and *&$%*^(!%(#@%(#@. I know I'm not the only one who suffers and by god, I am so angry at whoever invented this stupid disease because it's just not flaming fair. |
Posted By: ginger
Date Posted: 21 April 2008 at 11:38am
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I know. It's hideous. If I was you, I would find out as much as you can (demand to know!) about what they found - a report should have been sent to your Dr, and if not, demand that one is - and I would get yourself in for excision - getting it done in the next few months will mean your body is well healed by the time you are TTC. If you endo is very bad, TTC may be a nightmare of not being able to, and your body rejecting the baby if you do.
I completely understand about tears and tantrums - I had one on Friday a bit, and very nearly ended up in tears. I was dealing with IVF drugs and a terrible AF and people wanting me to do too many things at once ------------- Cuinn Lachlan 23.1.09 - 22:00 Antonia Helene 4.8.11 - 09:41 |
Posted By: minik8e
Date Posted: 21 April 2008 at 11:48am
| Does endo cause miscarriages then - in the sense that your body rejects the baby? |
Posted By: ginger
Date Posted: 21 April 2008 at 12:48pm
There are theories that it is. It's not unusual for endo girls who have had endo related fertility issues to also have difficulty carrying. The Chinese believe that endo is tied in with the immune system and that the immune system can reject the baby. I can't even remember where I got the info from now but I swear it's not my imagination!  
The thing with endo is that there is no firm theory about anything - what causes it, how it affects fertility, and from person to person symptoms etc are different as well, so it can be hard to find out concrete information. ------------- Cuinn Lachlan 23.1.09 - 22:00 Antonia Helene 4.8.11 - 09:41 |
Posted By: minik8e
Date Posted: 21 April 2008 at 12:57pm
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No kidding, most of the info I have is from here, and the endo site. Maybe this doc will be more help with info and plans. I don't seem to have trouble conceiving, more holding on to babes.
Wouldn't it be nice if there was something that could be done that was guaranteed to have long term effectiveness. It's just not fair to have this stupid thing. |
Posted By: busymum
Date Posted: 21 April 2008 at 5:44pm
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How'd the apmt go? hopefully you can take steps to have it removed. Would you consider the BCP while you wait to TTC? -------------  |
Posted By: minik8e
Date Posted: 21 April 2008 at 6:22pm
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Doc appt went well. Am now on Nurofen, Panadol and Acupan for the pain (I didn't want codeine), and have started on Noriday (mini pill). I have to keep a diary of pain for 2 cycles, then go back to the doc and get a referral to the gyn up at the hospital to take further steps. Taranaki has a major shortage of gyn/obs - 3 have resigned, leaving just 1 for the entire district, so waiting lists are huuuuuge unfortunately . But we have a short term plan, medium terms plan and long term plan (the ob/gyn). It's a start.
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Posted By: busymum
Date Posted: 22 April 2008 at 5:38pm
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Gah! It's a shame he couldn't refer you and you do the 2 month diary during the wait.
I hear ya on the wait thing though, it's been 6mos since my referral and I haven't even met the specialist yet
Why the mini pill? (as opposed to 'maxi') ------------- |
Posted By: busymum
Date Posted: 23 April 2008 at 7:46pm
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I had a rough day today too. I am aching so much and I've been kinda grumpy tonight (DH is staying clear!). I couldn't wait til the end of work today, I just feel so down about it all. I've tried all the 'diet' restrictions (well, nearly) and nothing makes much difference. Certainly not to the pain. It's horrible. I haven't been in so much pain since I started on the Pill in December. I just want it over with.
On the brighter side, at lunch time I went to Countdown and got myself panadol, bananas, and chocolate. A BIG chocolate. Stuff the watching the diet thing LOL! Ginger, I thought you'd had a lap? Has yours come back so soon? ------------- |
Posted By: Peace
Date Posted: 24 April 2008 at 1:33pm
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If you ever need an ear to moan to and a cuppa tea (while my toddler and chihuahua take turns at attacking you by the knees), I am happy to have you over! I am not shy and do a lot of aimless chatting I am so sorry to hear about your pain, please take care of yourself and flick me a PM if you need an extra ear! ------------- DD1 May 2006 DD2 March 2011 DD3 August 2012 |
Posted By: minik8e
Date Posted: 24 April 2008 at 4:07pm
busymum - huge . That's just where you get to isn't it - you just want it over with. I was in such a state the other day that I just wanted to tell the doc to take the whole bloody lot out, I didn't care anymore, cos it isn't living when you're like that. And grumpy...hrmmm, yeah, grumpy happens. I apologised to the girls at work when I got back, put it that way, and had to apologise to one of our brokers that I emailed on Monday before going home  For the pain, why not see if there's something more the doc can give you? That's what did it for me in the end, I couldn't do the pain anymore. I won't take codeine based painkillers, because I go doolally, but there are other options (for me, a mix of 3).
And it was mini pill rather than combined because of some other health issues. Also, apparently with the mini pill, the effects of IBS don't interfere with it so much (upset stomach etc.) As it is, we are rethinking when to TTC, just to try and deal with it - I really don't want to have surgery again unless it's unavoidable, as I have had a major surgery twice in the last 10 months, and the recovery time (for me) is not good, especially as I'm not eligible for sick leave again until November as I used mine after my last surgery in November. I hope you're feeling slightly better today though. Once my drugs kicked in it wasn't so bad, although I still have constant pain. |
Posted By: busymum
Date Posted: 24 April 2008 at 7:30pm
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Right now I'd just love to get pg, mostly as an escape! I know it sounds horrible. I do want another baby, somehow I really don't think we can yet but if it's at all possible I know it would help the waiting too. But then I feel bad for feeling like that...
Today was heaps better. Everything has just got to me lately because my periods barely used to hurt and this time it really, really did. They used to be my week off pain with all the other weeks being painful. If I was still on the Pill I'd be on sugars this week, so being off the Pill doesn't even count yet, does it??? (My last pill was on Friday last week.) You can't have codeine while TTC can you? What about voltaren? I'm still on panadol/nurofen, methinks the next level of pain relief will be one of the topics when I next see my GP. While I was walking today I could feel my ovary (I think it is!) tugging with my steps. Adhesions is all I can think. I wonder what kind of mess they're gonna find when they open me up.------------- |
Posted By: minik8e
Date Posted: 24 April 2008 at 7:51pm
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I'm on Panadol, Nurofen, and one called Acupan...although if we plan to TTC sooner rather than later this may have to be reviewed, as it's not recommended. Voltaren and Nurofen are similar I think - they call them NSAIDS, which is basically an anti-inflammatory. I can't find anything that says not to use them while TTC, only not late in pregnancy.
Yeah, mine were always painful, the last two have been a right kick in the guts. And I would love to be pg too, but it's got to be a joint decision and it's still under discussion at the moment!!! Hehehe |
Posted By: Chovynz
Date Posted: 24 April 2008 at 8:33pm
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My sympathies to you.
I dont understand, but we're here for you. Busymums DH. ------------- Defending the male species since 1980 
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