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Post by Karen on Apr 16, 2011 9:07:16 GMT -5
Sorry, hun, feeling like ass sucks. Hoping the scan is SOON and they speed things up for you!!
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Post by hellsbells on Apr 16, 2011 9:21:29 GMT -5
Sending lots of lovely warm cuddles your way x
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Post by gemstone on Apr 16, 2011 10:28:20 GMT -5
Aww, thanks guys!!! It's all good, I'm loved and happy and this WILL fall into place at some point
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Post by gemstone on Apr 28, 2011 3:54:31 GMT -5
OK, I am off to the hospital today and have decided not to carry on with the zoladex injections. I had some relief during the month, but as all the usual pain and problems have come back I'm not willing to keep going. It sounds like a cop out, I should give it more time etc, but this last month I have felt crappier in general than I usually do, and tbh, all I want is to have a break from my periods so I can not have all the horrendous pain that nothing touches and to get to work - I'm tired of calling in sick!! Also, although I am certain and the docs are certain I have endo, I an not yet officially diagnosed and I have been uneasy about having the injection and HRT as it seems so extreme. So I'm going to ask for the pill and run it back to back for a few months - I'll take the advice of the doctor, but (and not to sound big-headed or anything), I feel I know where I am with my body, my issues and my pain so if they're not up for giving it to me, then I think I will have to go to Family Planning to get it. I'm not fussed on hormones etc, but I was on the pill for years so I know what I'n going into, even if it is different now the endo has really got a grip. So, I hope you know where I'm coming from
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Post by cherry on Apr 28, 2011 4:47:17 GMT -5
I agree 100% with what you're doing. We've had a big view of the crappy journey you've been on just to get an initial laparoscopy... well if they don't want to give you the pill after having you on something as nasty and far-reaching as GnRHa then it'll be preposterous but luckily you've prepared for that. I went to family planning to get one of my mirena coils removed. Easy as 'I don't want it any more' and out it came. I stupidly opened my mouth after, with the pure relief of it all and the nurse was worried that she'd get in trouble for 'messing with the doctor's plans' but I just swore that I'd never say where I'd had it taken out. I had been in so much pain with it and sometimes all you want is a simple 'I need this' and not for a doctor to say no because it doesn't go along with their convoluted plans of god knows what which isn't helping you anyway. I take my pill back to back and the nurse who said I could and should, she recommended I 'listen' to my body, that my body would tell me when I'm ready for a withdrawal bleed and to take my week off then. She said it would be spotting that would tell me to take that week out but as you said, you know your body and the signs. I feel lucky to know such a brave person and such a brave group of women. We really do take some rubbish don't we. They can stick their injections. Honestly some of the stuff you've been told these last months would be funny if it wasn't ruining someone's quality of life.
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Post by Karen on Apr 28, 2011 5:21:03 GMT -5
Sounds like a good plan, Gem! Hope it goes well and they listen to you so you don't have to go elsewhere!
When's the scan?
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Post by JC on Apr 28, 2011 6:18:05 GMT -5
You're the one that knows your body the best so you will always make the right decision! I hope the pill gives you some relief back. You've been through enough already so I think you're making a good choice.
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Post by rhodygirl on Apr 28, 2011 9:03:16 GMT -5
You poor thing. I don't know how I ever missed this, but what a LONG ordeal. As the others have stated, you know your body best and need to make your own decisions even if it isn't always what the Dr's recommend. I hope they will prescribe you the pill again so you can get at least a little bit of relief.
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Post by gemstone on Apr 28, 2011 10:45:47 GMT -5
If my endo was a boyfriend, I would have dumped his ass a hell of a long time ago.
I am posting as I am calmer now, the boyf took me for a picturesque walk around a lake close to us and I had an ice cream and coffee - both bad, but I needed it.
I get to the hospital for my appointment, in good spirits as I know what I want and am set on getting it.
The nurse calls me in as I 'am in the wrong waiting room'. I laugh and say 'oh, that's strange I am always in that one!'. She then goes onto explain that I am not seeing a doctor today (news to me as I was told I would be seeing a doctor, just not the doctor I saw last time), I am seeing a nurse as she will administer the injection. I explain that I no longer want it etc and want to go on the pill. She says ok, she will try and find a doctor. Then one comes out of a room and she grabs him and explains and he says 'ooh, I'll have to think about that, but she will need to see her doctor'. Really?
I speak to the nurse further and explain that all I want is to give the zoladex back (as they gave me the pack last time to bring with me) and get a prescription for the pill. I am told that no doctors will see me as I need to see 'my doctor' Just to clarify, every time I have been I have seen someone different, the last time I went I actually saw the doc who heads up the department. The nurse says she will get me another appointment (June 6th!!!!!) but that I may want to go to family planning or my GP to get the pill.
I am so angry and frustrated. If they had said I would be seeing a nurse, I would have called and cancelled and made another appointment to see the doctor. The fact the nurse is saying to go ahead I do what I want to do but the doctors there will not touch my case is ludicrous!!!!
Still no word on the scan - I suspect it will also be June before I get that now.
I am sick and tired of this now. I have endometriosis, not a toothache. If the endo is as bad as they are making out, i.e through the vaginal wall and into the rectum and the the pouch of douglas, then why am I being left like this, given hardcore hormones in the most blase manner I have ever seen and sent on my way. If I didn't have this board, you guys and half a sense to help myself though diet and other such things, god knows where I would be.
Edit to say I have an appointment next week with my GP to get the pill.
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Post by JC on Apr 28, 2011 11:05:37 GMT -5
GOD what a pain in the ass!! Why does it have to be so damn hard??? I hate this!! I'm sorry they are giving you hell. This just really sucks. I hope at least your GP will help you and not toss you around, yet AGAIN.
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Post by Karen on Apr 28, 2011 11:15:17 GMT -5
f**k, that sucks. But, Im proud of you for not doing what was just 'easiest' for them because that's NOt WHAT YOU WANT! You didnt back down and you deserve a pat on the back for that!
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Post by gemstone on Apr 28, 2011 11:33:41 GMT -5
Thanks guys:) I was on the pill for almost 10 years, when I came off that's when the major problems happened so I know I'm fine on the pill. I am going to run it back to back and then have a break when I feel I need one.
I just feel like, I really don't know huge amounts about this - I have read textbooks, scoured the internet and of course this site - but I know my body and I know the endo is playing havoc. I have constant pain, I bleed a little every day, sex hurts, I get UTI's frequently, I have major bowel problems, bladder problems at certain times of the month, exhaustion and headaches. The fact of the matter is that I have dealt with this for so long, that it is part of me. When I'm sitting (and that is always painful), and I say to the doctor that even sitting down hurts and he just nods, I know I'm not getting anywhere.
I'm going on the pill which should hopefully mean I can get to work everyday which will stop me stressing about that. I know I can deal with the rest of it, as I do every day.
I'm still positive and grateful that I can stay positive, but I do feel a bit more defeated than I did yesterday, I have to admit.
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Post by pretty on Apr 28, 2011 12:34:28 GMT -5
Gem, I feel for you sister, let me know if there's anyone I can kill to get you the help you deserve and need. Damn!
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Post by gemstone on Apr 28, 2011 14:42:48 GMT -5
Thank you pretty!! I'm practising my kung fu, you should too, just in case
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Post by hellsbells on Apr 28, 2011 16:49:22 GMT -5
I want to drive down and pick you up and bring you here to present you to my doctor. I'm so mad and sad and f**king annoyed about the way you're being treated down there. It's such a disgrace. You're amazing with what you've handled up so far, I hope and pray that you'll get the attention you need soon. And I'm with you all the way on dropping the Zoladex in favour of the pill right now. Hang on in there my sweet x
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