Mothering Forum banner

1 - 13 of 13 Posts

·
Registered
Joined
·
2,257 Posts
Discussion Starter #1
Ok, I have had 4 pregnancies which resulted in 3 children.<br><br>
I have Ehler Danlos Syndrome and Fibromyalgia and PCOS, IBS.<br><br>
About just over a year ago I had my tubes done and the Novasure procedure.<br><br>
I am telling you all this cos I don't know whats causing this pain and I don't want to see my Doctor, no real reason except I have been driving her crazy by demanding she treat my fibro and then reacting to all the treatments and I just kinda want to kinda give her a break.<br><br>
I have this gnawing pain in my lower abdomen. Its worse when I move. There is no blood but I do have a discharge similar to when I am fertile.<br><br>
I do not bleed during periods any more, I do not known whether I am 'feeling' a period right now but its been going on for over a week.<br><br>
I just don't know, all I do know is that it hurts. It doesn't feel like IBS, its too much in the middle and just the wrong pain.<br><br>
I take Paracetamol, Ibuprofen, Tramadol and Oxycontin every day and I am still feeling pain (I expect that from my EDS and fibro but not from other pains, I don't know why).<br><br>
What on earth is going on??????
 

·
Registered
Joined
·
6 Posts
In view of your complex health history, I think this needs investigation with some urgency. I do not think that it is appropriate to try and guess what may be going on with you. But you describe breakthrough pain whilst on opioids, and a range of other painkillers.<br>
I have some suspicions what may the problem, but it would not be appropriate to make what would be no more than an educated guess.<br><br>
Good luck<br><br>
Chris NP
 

·
Registered
Joined
·
6 Posts
Your analgesia sounds well balanced and appropriate for the pain your conditions are likely to cause. Assuming of course that you are within the long term dosage guidelines and the paracetamol is in the form of a sustained release option, e.g. Panadol Osteo.<br>
Lower abdominal pain is not consistent with liver injury from medications.<br>
I still think that as long as you are happy with the performance of your personal physician you should consult them. As the abdomen can be a minefield for the unwary, especially for a person such as yourself with multiple body system diagnoses.<br><br>
Chris
 

·
Registered
Joined
·
628 Posts
I would highly, highly suggest you look into the GAPS diet. I have a connective tissue disorder as well and it's is definitely helping. Originally, I started this diet due to food allergies but it helped me identify so many other issues. I'm actually healing now!<br><br>
To start, visit the allergies sub-forum.
 

·
Registered
Joined
·
2,257 Posts
Discussion Starter #5
Thanks for your replies!!!!!!!<br><br>
I am kinda happy with my scripts, still in quite a bit of pain with fibro etc but I can't take the usual other stuff - gabapentin, pregabalin and I just tried mirapex and it gave me vision issues so I am not alloed that. My GP is currently looking into muscle relaxants to help though.<br><br>
Thanks to the fibro, I forgot I even posted this.<br><br>
The pain isn't as bad today, its not hurting to cough or anything but it is still very tender with a bit of pressure but that could be my fibro. It got quite bad yesterday and I wasn't sure whether I should go into hospital or not, decided to leave it (because of my complex health history, I can find hospital trips and doctor visits, somewhat difficult because I am always offered a psych evaluation like I am crazy, <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/eyesroll.gif" style="border:0px solid;" title="roll"> , honestly........ I mean fibro has been classed as real problem for how long now????). I know the leaving it sounds crazy but there we go.<br><br>
So, I might try and see if I can chart my cycle and see if it has anything to do with that, pre tubes and novasure procedures, I would get incredibly painful periods, the pain would last only a day or two but I guess, there is a possibility that this might have been period cramps and because of the ops, the pain bit lasts a bit longer, why I haven't felt it before now I don't know, BUT, I am talking to my GP tomorrow so I will discuss it with her anyway and probably get a urine test etc just to be on the safe side.<br><br><br><br>
As for the drugs I am taking, pain sucks and I will take anything, even if it shortens my life span, if it means that I can still do some things with my kids while it counts (ok, so it counts forever but they need me more now). This isn't just an 'ow, it hurts', this is a day in and day out constant pain involving headaches, muscle pain, subluxing and dislocating joints, parts of my skin are so painful ie my scalp, I can't brush my hair because it hurts too much and my tender points are incredibly painful. Even with the pain meds, the slightest bit of pressure anywhere on my body hurts like hell. I would much rather not take meds at all, but not everyone is so lucky.<br><br>
CalliforniaJenn, I am going to look into what you suggested, willing to try anything!!!!!!!!!
 

·
Registered
Joined
·
2,257 Posts
Discussion Starter #6
And just a little whinge coming up.....<br><br>
I like mothering.com, however, the past few years I have found myself coming less and less for this particular issue-<br><br>
I understand that mothering.com is a natural minded forum but I am finding it difficult, when discussing my issues, because people get a bit funny about me taking meds. We all realise that sometimes, people need meds, people use them for depression, some people require c sections, some women can not breastfeed and have to use formula etc etc etc. So why is it, people get funny with me about my taking strong pain relief for my chronic pain problems?<br><br>
I have tried different diets, chiropractors in my area will not touch me because of my being so hypermobile, it scares them because I will dislocate, massage is a big no no because it is intensely painful for me and I end up worse, I have tried herbal things, supplements and other natural thereapies but they either do not do much or they are so costly that I can not carry on (I can not work, my husband is also ill and can not work and we have 4 kids who are home schooled, 3 have ehler danlos like me so we have to use public transport more than we would like, one of them also has IBS etc due to possible fibromyalgia as well and also other food issues, 4 of us are allergic to dairy which increases our food costs, my eldest daughter has speech issues and is in speech therapy because of her EDS and this costs us as well and so it goes on and on and on). We are simply not in the financial position to be doing x.y and z even if we found them to help.<br><br>
Narcotics aren't always effective with my pain but they do mean I can live a better life than if I wasn't on them so when I come here with genuine questions and get weird little comments (one person asked me once on the forum whether I just wanted to go narcs anonymous..........).<br><br>
I just don't get it? This place is supposed to be friendly and while a lot of people are helpful, the last thing I need when I am knackered and in pain is comments like that.<br><br>
I have been in pain for 29 years, my whole life, My EDS isn't as bad as some peoples but dislocating a knee by simply kneeling down is still painful, dislocating a shoulder in my sleep is excruciating and dislocating and subluxing my jaw any time I vomit/yawn/eat/sleep is down right irritating. I am facing ops on both shoulders because of arthritis and I don't know, it just sucks and thats not including the IBS (which again nothing seems to help), pain every time wee even though there is no infection, only being able to stay awake 8-10 hours a day, having parents that are disappointed in you because you didn't turn out the way they wanted you too and crap like that.<br><br>
I didn't ask for comments on what I was taking (unless someone thought that there was a possibility that the pain was associated as a side effect and seeing as though my liver isn't any where near my groin, I can't see how that could be it), I just wanted some thoughts on what the pain might be and why, despite the pain relief I am taking, is it so bad.<br><br>
Maybe its because I have fibro and people still don't believe in fibro???? I don't know but I have done a hell of a lot for myself, tried loads of self help things and not a lot has worked. I lost over 7 stone in weight because a rheumatologist told me that my weight was the cause for my pain and tiredness and even at anywhere between 9 - 10 stone,I still hurt.<br><br>
I guess I am just tired of the snidey little comments I get for this and to be honest, I think I have had enough.<br><br>
I will definitely check out the allergy forum and I want to say thank you to those who were helpful, I just don't think I will be using mothering.com again.
 

·
Registered
Joined
·
2,945 Posts
Oh honey, big soft hugs to you! Reading just made me cry. People who don't have chronic pain just don't understand chronic pain. To most people, you get sick, it sucks, then you get better. When you have chronic pain, and you DARE to talk about it with someone who doesn't, they just loose their grip because it is SO FAR REMOVED from their own life experiences... Most people want to help, but when you don't jump on their suggestions (as well meaning as they are), well, then, they make you feel like you aren't trying hard enough. Like if you wanted to feel better BAD enough, then you would... if I had a nickel for everytime <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/eyesroll.gif" style="border:0px solid;" title="roll"> My marriage almost ended bc of chronic pain.<br><br>
A million light little butterfly kisses to you! I don't want to loose you on the forums, you bring such fullness and empathy to so many conversations...<br><br>
As to your OP <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/winky.gif" style="border:0px solid;" title="Wink"> Novasure is the implanted spring-like thing in the fallopian tubes, right? Any type of implant can migrate and cause pain. I had an IUD that was baldy placed, and it embedded in my uterine wall. I kept telling the gastro it was NOT Crohn's pain, it didn't feel intestinal-- he had me believing I was developing a fistula and to suck it up and deal. I got fed up and had the IUD removed in a last ditch effort to STOP the EXTRA pain... immediate relief when that thing came out. (of course, found out later I could have died from it and they should have done U/S to locate position, etc <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/eyesroll.gif" style="border:0px solid;" title="roll">)<br><br>
If it is the implant, got to the gyno and have it visualized with U/S. If I'm totally off base and there is no implant, ignore that part, but keep in mind the rest <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/love.gif" style="border:0px solid;" title="love">
 

·
Registered
Joined
·
4,308 Posts
I couldn't read and not offer hugs. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I have no insight, but I felt it important to say that I certainly feel NO judgment whatsoever towards you for taking whatever medication you need to take (or anyone else for that matter). Until you've walked in someone else's shoes you have no idea what you're talking about. Your pain sounds awful mama, and I wish you whatever relief you can find. (I had tears in my eye reading about your experience) <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

·
Premium Member
Joined
·
10,793 Posts
Hey there,<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> Not everyone here is anti-med. You have to do what is right for you and for your family. There are natural remedies out there sure. But may not help in all situations. KWIM? Same with meds. It's finding a balance.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

·
Registered
Joined
·
2,411 Posts
I believe you. My mother has had CFIDS for the past 25 years and lives with debilitating pain every day, despite prescription meds. Every new thing she goes to the doctor for she gets ridiculed. She was just recently widowed and is now living in poverty but cannot collect disability due to a HORRIBLE CFIDS loophole.<br><br>
Her current doctor doesn't believe in CFIDS. Great, thanks for your help.<br><br>
It's really hard to find a doc who will take those disorders seriously, I know. Hugs.
 

·
Premium Member
Joined
·
9,138 Posts
<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I'm sorry--you're dealing with more than many could handle. I know I and many others here understand and feel nothing but sympathy and concern for you.<br><br>
I'd see the doctor you trust (I don't think she'd want a break esp. when you're in this kind of unknown source pain) and also the doctor who did the Novasure. I'm wondering if something (endo for example) is going on there. Is the pain in an area where that might be possible?
 

·
Premium Member
Joined
·
9,388 Posts
OP, I'm sorry you're going through all this. I don't have enough knowledge of any of your conditions to really offer advice, but I did want to say that I know how you feel, about the reaction that can sometimes come up in naturally-minded circles, like MDC and others, when you talk about your meds. It's happened to me, too, many times, and it sucks. So I just wanted to give you a shout-out for having the courage to stand up and defend your decisions. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up">
 

·
Registered
Joined
·
2,257 Posts
Discussion Starter #13
Ok......... <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/redface.gif" style="border:0px solid;" title="Embarrassment"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/innocent.gif" style="border:0px solid;" title="shy"><br><br>
Thank you........ Kinda restored my faith a bit!!!!!!<br><br>
Because I am in the UK I would need my GP to refer me back over to Gynae which is a bit of a pain in the back side.<br><br>
The Novasure procedure is a type of ablation, so everything in there got zapped (I needed to know there was no way I could get pregnant what so ever seeing as though it turns out I have passed EDS on to all 3 of my girls and it now also seems that there may be a genetic component to fibro as well apart from it being occurring a lot with fibro.<br><br>
Sooooooooooo, what I am going to do is call up the genito urinary medicine clinic because I can self refer there.<br><br>
It is hard to know what might be going on because there are so many possibilities (I make to many oxalate crystals as well which can irritate the bladder, kidneys etc and have had them form into stones).<br><br>
With regards to the pain killers, they don't completely rid me of pain, my DH suffers chronic pain as well and he gets so much relief!!! I am jealous. The oxycodone do seem to be working better than the morphine I was on though, I don't feel so wiped out with the oxycodone which is nice.<br><br>
A few years back, they wouldn't let me have anything stronger than codeine because they (the docs) didn't believe me and my life was hell on earth, I was at a point where I couldn't even open doors any more because it was too painful to use door handles. Then I got diagnosed and we have been trying different types of pain meds etc ever since and while they are far from being 100% effective, they do allow me some relief.<br><br>
So yeah, thank you all and for those who are in pain as we speak, I feel it!!!!!
 
1 - 13 of 13 Posts
Top