There is no pain, you are receding...
Jun. 16th, 2011 05:17 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
logansrogueOkay, so this is the letter I wrote to my endo support group today:
Well, I've had quite a week. First of all, the pain has been increasing lately in my pelvis. For those that are new, I'll just briefly describe my endo journey so far. 3 laparoscopies, 2 where they excised endo (because the gyno didn't believe I had it in the first place and didn't prepare for it). Tried Levlen, Microgynon, Mirena and something else that slips my mind. None of these worked well with me. Mirena was particularly horrible. Have been surviving on Ponstan and Codeine, visiting pain management to help with the pain that I've been told is neuropathic. I no longer think it is, especially due to the results of an ultrasound I had this week.
The ultrasound was going swimmingly. Everything was normal. A good level of endometrium lining inside a normal looking retroverted uterus. Right ovary a nice, oval, healthy looking thing with a row of beautifully distinct follicles. I was showed the recruited follicle for my next ovulation. Then the right ovary.
There was a dark vascular patch on the top of it. It is measured at 11 x 19 x 15 mm. They're fairly sure it's endo. I was on day 9 of my cycle, so it wasn't likely to be fluid from a burst follicle. Though if I get my period super early, maybe it was. :-P
I went outside the ultrasound place, 200 dollars out of pocket (and only having 125 dollars on me, which I promptly gave the lady and promised I'd be back tomorrow once the government had paid me my paltry disability payment). A couple walked past with their toddler son, all blond hair and big blue eyes. I promptly burst into tears and sobbed my heart out. My ovaries had been in perfect condition until now. I'm looking down the barrel of having to have a baby in difficult circumstances, but I'm bound and determined that I will have one, some way, some how, no matter how hard it is. I know I am meant to be a mother.
I saw the doctor today, and we talked about coping plans and me seeing my gynaecologist again. To be honest, I'm not too crazy about my current gyno, but he seems a good sort at heart and truly interested in helping me cope with my problems. I hope he has some tangible and reasonable options for me when I see him. Until then, the doctor has given me a new BCP to try - the pill, something beginning with Q. I forget the name right now. It's a fairly new one, with a *lot* of stages!!
She also listened to me when I told her that Dolased (10.5mg Codeine phosphate, 5.1mg Doxylamine succinate, 500mg paracetamol) wasn't cutting the mustard anymore as a pain killer, that it helped for two isolated patches of the day, and then the rest of the day I was basically boned. She gave me a prescription for slow-release oxycontin, 10mg. I am absolutely terrified of taking it. I've read the side effects and I've also heard a lot about how addictive this stuff can be. I'd rather take more codeine than get hooked on something like oxy. Has anyone here ever taken it? Is it effective, or even worth the crappy withdrawal symptoms?
Anyway, the fact that the doctor listened to me about the pain and everything else and gave me new things to try, and listened to my problems and was truly concerned for my well-being and respectful of me - I burst into tears. Happy, grateful tears.
"I don't know why I'm crying like this," I'd said to her, "I just can't tell you what I've been through. It's so good to finally have a doctor that listens to me."
Seriously, if you're in the Perth area, my doctor is an absolute angel. I have never, ever felt stupid for coming to her with symptoms that bother me. Ever.
Half my stress and concern and the reason I even brought pain up with her was because my pain management doctor had given up on me, it seems. His notes were, "Given [the medication for neuropathic pain], keep taking, continue with psychological care." And I blew my friggin' top.
I was stomping around the kitchen, practically shaking with anger, ranting at my mother, "I'VE BEEN THROUGH RAPE TRAUMA! I AM NOT HYSTERICAL! I AM IN REAL PAIN, DAMN IT!" Hence, why I cried when my doctor took me at my word. The other thing was that the pain management doctor didn't even bother to schedule a follow up appointment to see if I was all right on the new pills. The new pills had a high incidence of making people suicidal. It was such a frightening possibility that I didn't end up taking it because a) I had my doubts that it was neuropathic pain (rightfully so) and b) the rape trauma, and past depression issues.
In other health news, I am going to get the final verdict on whether I have gluten intolerance or not (doesn't matter what the verdict actually is, I'm not eating it again, too much pain, bloating and weight gain!). I've had two gastroscopies in as many months, and I tell you, those weeks of gorging oneself on wheat products is NOT FUN.
So, a huge essay later, now you're all caught up. :-P My love to everyone on list, and I hope you're all doing okay.
Hugs, love and painfree days,
Nancy.
Well, I've had quite a week. First of all, the pain has been increasing lately in my pelvis. For those that are new, I'll just briefly describe my endo journey so far. 3 laparoscopies, 2 where they excised endo (because the gyno didn't believe I had it in the first place and didn't prepare for it). Tried Levlen, Microgynon, Mirena and something else that slips my mind. None of these worked well with me. Mirena was particularly horrible. Have been surviving on Ponstan and Codeine, visiting pain management to help with the pain that I've been told is neuropathic. I no longer think it is, especially due to the results of an ultrasound I had this week.
The ultrasound was going swimmingly. Everything was normal. A good level of endometrium lining inside a normal looking retroverted uterus. Right ovary a nice, oval, healthy looking thing with a row of beautifully distinct follicles. I was showed the recruited follicle for my next ovulation. Then the right ovary.
There was a dark vascular patch on the top of it. It is measured at 11 x 19 x 15 mm. They're fairly sure it's endo. I was on day 9 of my cycle, so it wasn't likely to be fluid from a burst follicle. Though if I get my period super early, maybe it was. :-P
I went outside the ultrasound place, 200 dollars out of pocket (and only having 125 dollars on me, which I promptly gave the lady and promised I'd be back tomorrow once the government had paid me my paltry disability payment). A couple walked past with their toddler son, all blond hair and big blue eyes. I promptly burst into tears and sobbed my heart out. My ovaries had been in perfect condition until now. I'm looking down the barrel of having to have a baby in difficult circumstances, but I'm bound and determined that I will have one, some way, some how, no matter how hard it is. I know I am meant to be a mother.
I saw the doctor today, and we talked about coping plans and me seeing my gynaecologist again. To be honest, I'm not too crazy about my current gyno, but he seems a good sort at heart and truly interested in helping me cope with my problems. I hope he has some tangible and reasonable options for me when I see him. Until then, the doctor has given me a new BCP to try - the pill, something beginning with Q. I forget the name right now. It's a fairly new one, with a *lot* of stages!!
She also listened to me when I told her that Dolased (10.5mg Codeine phosphate, 5.1mg Doxylamine succinate, 500mg paracetamol) wasn't cutting the mustard anymore as a pain killer, that it helped for two isolated patches of the day, and then the rest of the day I was basically boned. She gave me a prescription for slow-release oxycontin, 10mg. I am absolutely terrified of taking it. I've read the side effects and I've also heard a lot about how addictive this stuff can be. I'd rather take more codeine than get hooked on something like oxy. Has anyone here ever taken it? Is it effective, or even worth the crappy withdrawal symptoms?
Anyway, the fact that the doctor listened to me about the pain and everything else and gave me new things to try, and listened to my problems and was truly concerned for my well-being and respectful of me - I burst into tears. Happy, grateful tears.
"I don't know why I'm crying like this," I'd said to her, "I just can't tell you what I've been through. It's so good to finally have a doctor that listens to me."
Seriously, if you're in the Perth area, my doctor is an absolute angel. I have never, ever felt stupid for coming to her with symptoms that bother me. Ever.
Half my stress and concern and the reason I even brought pain up with her was because my pain management doctor had given up on me, it seems. His notes were, "Given [the medication for neuropathic pain], keep taking, continue with psychological care." And I blew my friggin' top.
I was stomping around the kitchen, practically shaking with anger, ranting at my mother, "I'VE BEEN THROUGH RAPE TRAUMA! I AM NOT HYSTERICAL! I AM IN REAL PAIN, DAMN IT!" Hence, why I cried when my doctor took me at my word. The other thing was that the pain management doctor didn't even bother to schedule a follow up appointment to see if I was all right on the new pills. The new pills had a high incidence of making people suicidal. It was such a frightening possibility that I didn't end up taking it because a) I had my doubts that it was neuropathic pain (rightfully so) and b) the rape trauma, and past depression issues.
In other health news, I am going to get the final verdict on whether I have gluten intolerance or not (doesn't matter what the verdict actually is, I'm not eating it again, too much pain, bloating and weight gain!). I've had two gastroscopies in as many months, and I tell you, those weeks of gorging oneself on wheat products is NOT FUN.
So, a huge essay later, now you're all caught up. :-P My love to everyone on list, and I hope you're all doing okay.
Hugs, love and painfree days,
Nancy.
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(no subject)
Date: 2011-06-15 11:23 pm (UTC)1) sleeping pills don't work on me, at all. Like, doses that would kill many smaller humans, don't even make me drowsy. I think the receptors are similar, and may well simply be blocked.
2) OXY ITCH! I fucking hate oxy itch. I should post a picture of my shins just now, with my alluring wounds from the nights where I've scratched my poor shins bloody in my sleep. Thankfully, it's one of those things that only hits when I'm at high (for me) dosages. If I'm on my usual maintenance dose, this one hardly ever happens. Ever see heroin addicts scratching their forearms and shins? That's oxy itch. I get it a day or two after I play soccer, because of the elevated dosage I use to get through the games.
My experience with the SR, btw, is that they claim it's good for 12 hours. Believe this like you believe 1 Advil could cure anything ever. I find that 8 hours is a fair guess for how long they last, 6 if it's a bad one.
(no subject)
Date: 2011-06-15 11:27 pm (UTC)2) Ah, I've had that when I've had a day full of codeine. I remember having terrible itches when I was on pethadine. I was so high I kept scratching my face. I left the hospital with little scratches on my cheeks. I only get slight itching with codeine, though. But it won't be a rude surprise to me. I'm an opiate veteran.
Huge thanks for your feedback on this, btw. Whenever I look online for stuff about oxy, all I read is horror stories. I needed to hear the good side so I could balance up the risks and the benefits properly.