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Post by pretty on Jun 15, 2011 12:35:20 GMT -5
Thanks Keri your support means a lot, you're kind of a 'good attitude role model' for me lol. I take so much from your posts. xxxooo yes and I am SUPER STOKED to meet Karen!
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Post by 1234 on Jun 15, 2011 13:41:14 GMT -5
I love that bucket metaphor.
Pretty I hope you've been able to empty your bucket!
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Post by painttheseconds on Jun 15, 2011 20:46:06 GMT -5
I want to come hang out with you and Karen. We have to have an endo girls get together sometime in the future.
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Post by Karen on Jun 16, 2011 5:14:33 GMT -5
Ah, yes, we need that endo cruise some day!
Am looking forward to hanging out with our Pretty!!!
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Post by JC on Jun 16, 2011 5:39:26 GMT -5
We're all waiting for someone to win the lottery so they can get the endo cruise going! My bags are already packed. I'm ready to go!
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Post by pretty on Jun 22, 2011 15:11:31 GMT -5
Ok Have been taking the Aygestin for 9 days. Still spotting from the cyst. Had a 'period' for 4 days with bright red blood as opposed to the purple-brown blood from the cyst. Or that's what I think it's from anyway.
How I feel: less of a mess than I expected, but I have had a couple giant zits and feeling pretty bloated. Took a break from temping just becuase I'm not TTC for now, and the hormones are throwing everything off anyway. it's my little 'vacation' from temping lol...
Today I talked to the Nurse at Family Planning and she tried to foist me off on a traveling GYN. I talked her into remaining as my 'point person' to help me manage my own care. I don't have any options since have already determined that the 'traveling GYN' who comes here twice a month is a Lupron pusher and can't help me. Anyhow Julie, the Nurse, is pretty awesome, I explained that my specialist in Tacoma is advising me to take this Aygestin for 3 weeks and then have another ultrasound. Julie agreed to do the referral for the US when I get back from my trip. i'm going to go and look at the results from the first US today in an hour so I'll know more then. What she did say is it's not a fluid filled cyst, it's more solid - in other words an endometrioma (surprise surprise). So I'll have more info in a bit and she's also got a release for me to sign so both US results can be sent down to Dr M in Tacoma.
I'm super bummed right now. My baby dreams seem farther and farther away. I have a strong feeling that the ache which I'm still feeling daily is actually a very sharp pain and I'm just feeling it wrong if that makes sense. I have a growing tension in my whole pelvis. Still can't afford PPT again until my deductible is met. I am scared to go on vacation and end up in the ER but hey life is a gamble right, and at least I have insurance. I'm scared too that when I get home and do the US that I will need surgery and that is just a whole raft of more sh*t to deal with. I feel blessed with my whole beautiful life, friends and fam, you gals, and my adorable hubby, but it's sooooo bittersweet since I feel like I'm about to go down the rabbit hole and I'm just scared sh*tless!
I'm taking a 1/2 vicodin to see if that makes me feel more relaxed. I know it sound wierd but I've now been told by several people that my response to pelvic pain is sort of miraculous, since I obviously have a majorly rotten case of aggressive endo and yet dont get to the 'pain' part until I'm in the ER or worse. I just feel tense, spooky, and irritated/achy/tender in a really intense way but even after surgery I was told to continue the narcotics even when feeling 'better' because the painkillers help my pelvic muscles unwind and relax, so I can poo and pee... Getting more and more of that tightness going on here and just scared to death! I'll be ok and I'm tough as nails but I'm broke and a little bit sad I have to go on like this for the foreseeable future with no way out but surgery.... YIKES I am scared!
Love you gals!
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Post by painttheseconds on Jun 22, 2011 15:38:50 GMT -5
I'm so sorry pretty. I wish you didn't have to go through all of this. You are in my thoughts and prayers. Take good care of yourself and let us know how you are doing. I wish there was more I could do. Just know I'm thinking of you.
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Post by 1234 on Jun 22, 2011 17:16:23 GMT -5
Pretty, I am so so sorry about the endometrioma, and the tightening, and the pain. Being shoved back into this is horrible. Your spirit and spunk are amazing. I hope you find a good answer for yourself soon, and one that still lets you have the summer you were planning on.
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lisa6
Junior Member
Posts: 73
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Post by lisa6 on Jun 22, 2011 18:54:54 GMT -5
Aw Pretty - I'm so sorry you're going through this. We all understand what you mean about being scared - just don't forget you're not alone. You can do this - just take it one day at a time. Hugs...
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Post by Karen on Jun 22, 2011 19:09:41 GMT -5
I'll be ok and I'm tough as nails but I'm broke and a little bit sad I have to go on like this for the foreseeable future with no way out but surgery.... YIKES I am scared! Pretty - I can really sense your fear and frustration for your body. I would be feeling the same. It has to feel like a slap in the face, doing EVERYTHING right and still feeling like this. But I really need to remind you - you ARE doing everything right. Even though your body isn't cooperating at the moment, you have medical professionals on your side lined up and at the ready and you are actively seeking help. I know you're tough as nails, but I'm glad you're still giving yourself permission to be worried because your persistance and ability to advocate for yourself will be your saving grace and WILL get you relief in the foreseeable future. Big hugs, hun! And if you have to empty that bucket, empty it!!
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Post by hannahjex on Jun 23, 2011 8:57:58 GMT -5
I'm so sorry, Pretty. It sucks right now and I wish there was something I could do, but you absolutely WILL get through this and come out on top.
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Post by pretty on Jun 23, 2011 12:32:21 GMT -5
That's right ladies! I feel like we're in an army or something. LOL thank you all so much for all your love and help. You gals rock.... this morning I was arguing with my darling husband and he says to me "go tell all your endo ladies what an ass I am!" I looked at him and said, those ladies are there for me to talk about MY STUFF and if not for them, this would be a LOT harder for both of us.... " I think he got it. This is not a bitch session. it's a support group, and these ladies SUPPORT the sh*t out of me! THen I had a dream that endo-resolved turned into an endo-encyclopedia over time and we had a giant library that doctors from all over the world visit to learn about this disease. *sigh* one day, right?
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Post by omaklackey on Jun 23, 2011 13:47:38 GMT -5
the dream is funny! I actually just read a thesis by a doctorate student and it was specifically listing Endometriosis support groups as legitimate resource due to the intensity of research that we do. It focused on endo groups but was overall saying that support groups like ours should be counted as reliable information sources. Cool right? IF only the doctors would support it as well. Big huge hugs your way through all this. I know what its like to go through a big change/surgeries/etc. and come out the other side going "wtf, why am I still having problems". I went all "endo diet" after my diagnosis and gluten free and was cooking these foul tasting messes trying to experiment and was unbelievably frustrated through it all as I ended in even more pain. Your definetely not alone.
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Post by JC on Jun 23, 2011 14:03:34 GMT -5
"go tell all your endo ladies what an ass I am!" LMAO! That made me laugh so hard that I actually had tears!! That was so funny!!!!! Despite our husbands being totally asses, we also understand why we love these guys.
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Post by Karen on Jun 23, 2011 20:29:05 GMT -5
Ah, Pretty, too funny!
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