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Adenomyosis Support

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My Journey with Adenomyosis [Oct. 1st, 2013|10:24 am]
Adenomyosis Support

adenomyosis

[mangocitrus]
Hi Everyone,
I just wanted to share my journey with you - so that maybe you can get some releif or at least know that you're not alone. It's hard because none of my friends, family, or peers have really heard about Adenomyosis, so I always feel really frustrated and alone when dealing with it.

It started with my journey to get pregnant. My ex-husband and I tried for 4 years. I was told my "unexplained infertility" was because I was fat. They didn't diagnose me with PCOS, they didn't diagnose me with anything except for "unexplained infertility". Which sucked - because it didn't make sense. Once chemically induced my cycles were "normal" and I ovulated "normally". We tried IUI and various other methods, but nothing. And honestly while I'm sad I didn't have a child, I'm glad it wasn't with him too. Small Blessings.

After my husband and I separated, I went to my doctor and asked him what we could do because when I wasn't on Clomid, etc, my periods were unbearable. AWFUL awful awful. I'm sure a lot of you can relate to the pain, and grossness of the periods you experience with Adeno. And I wasn't diagnosed yet at this point, even.

My doc sent me for an ultrasound, and it came back somewhat inconclusive - I had a small fibroid but they were not concerned about it. My doc however was concerned about the amount of pain and bleeding I was experiencing, so he sent me for an MRI.

After months of waiting to get it - I finally had my MRI. The MRI came back saying that it was partially inconclusive and that it appeared that I had Adenomyosis. My family doctor didn't feel comfortable treating this on his own, so he referred me to a GYN.

The GYN that I saw (currently see) used to be great - I had him years ago when I had cysts, etc. But now I find he rushes patients in and out. I ALWAYS wait at least an hour past my appointment time before I can see him,etc. So I always leave his office feeling uncomfortable and in Tears. However - it's difficult to get in to see another specialist and the waits are long and honestly if whatever he prescribes works - I guess I should suck it up right? Well that USED to be my attitude.

His initial solution was hystorectomy. Then I mentioned that I was previously attempting to have children and he said "oh well then not that". I asked him if I'd be able to bear children with this disease and he said "probably, I don't know."
So he put me on birth control.
After birth control.
After birth control.
None of them worked. Finally he goes "Well since you're a "bigger girl" you should just take 2, there problem solved."

Yes, problem was solved, HOWEVER I still spotted quite a bit - always around full moon (why? I have no idea...) - And I still had the PAIN associated with it - even if there wasn't the blood and gore. And my blood pressure skyrocketed to 165/120.

So. Yeah. Back at square one - I went to my family doc who put me on Blood Pressure Pills - which I'm not happy with. I don't want to be on those - but I also don't want to die. I just hate that everything that happens they just give you another pill to mask it. Eventually I'll be like my parents and require a duffel bag to carry around my medications. No thank you.

I went and saw my GYN and said "listen, this needs to end. I can't keep taking 2 bcp/day I'm going to have a stroke and die" so he said "well let's try an IUD!" and I was like "Um, but you told me that wouldn't likely work when I saw you 2 years ago, and that we shouldn't even try it" and he goes "I don't recall that, and it's worth a try - it might not work - but it might too, and if it doesn't fully work we can put you on a low dose pill with it and it should be ok"....
So I left the doctors office, uncomfortable and holding a prescription for a $350 "Let's try it!", and a pamphlet about the Mirena IUD. Several of my friends have this IUD and love it. But they're all normal, healthy, fertile women, who never have had a lady problem in their life, and their idea of a "heavy period" involves them having to but "regular" tampons instead of "light".

I read a LOT of information about it. Some good. Some bad. A lot about it not working for women with Adeno. A lot about it causing problems because Adneo makes your uterus shape different. A lot about it falling out with a heavy period. A lot...
And it didn't sit right - but I thought ok. I'll try it.

So I finally had a window where I could end the BCP and start a "cycle" so I did - and I called the GYN and I said "hey I'm ready for the IUD" and the girl says "oh he's gone next week, you'll have to come in on your next cycle" Um... no. I don't have cycles, this is the point. So I was annoyed and she booked me for November 7. And I started having reservations again.

I'm in a relationship with a man I've known for a long time. (He is actually on LJ, that's how I met him like 12 years ago lol). And I talked to him. We are very serious, and eventually do want to try to have a child, and another issue with the IUD is that it can cause infertility if it punctures something - but even if it doesn't I have to leave it in for a minimum of a year and who knows what will happen and blah blah I was stressed lol. So I decided after stressing about it for a long while that I would research "Natural solutions to Adenomyosis"

I had to weed through a lot of hippy bullshit (sorry if you're a hippy - I'm not meaning to offend you but it really annoys me when I'm reading about my "Delicate Moon Cycle" and Saving my "Moon Blood" to fertilize my plants...)
Anyway I came up with 3 things that apparently help:
Cod Liver Oil (and it's funny beause I've been avoiding Cod Liver Oil for so long)
Evening Primrose Oil (You take this CD1-14)
Magnesium
And Natural Progesterone Cream (Not the stuff the doctor prescribes you, the NATURAL stuff you buy at healthfood stores - or in my case, From Biovea on line.) (You use this CD 14-28)

I collected this information from several websites - dozens, and from posting on Facebook to my friends - because I have some lady friends that are highly into naturopathy and know a bit about this stuff... And I thought - Fuck it (sorry I swear), I'm going to try it!

So here's my timeline:
Stopped BCP on Monday last week. Called GYN on Wednesday. Got dicked around.
So I started my cycle on Thursday that was Day 1 of full-on heavy flow. Did my research on Thursday.
Started taking the following on Friday night:
1 x Cod Liver Oil (Jaimeson Brand, 300mg Cod Liver Oil with 400iu D3)
2 x Evening Primrose Oil (500mg per tablet - not sure the brand)
1 x 100mg Magnesium (Jamieson Brand, Highly Absorbable blend of magnesium sources)
My flow was heavy and gross (but not as bad as it has been not nearly) on Thursday and Friday.
I noticed a difference immediately on Saturday. I'd say my flow was moderate, and my pain had reduced. Over the last 6 days from Wednesday - today I have taken 3 advils total. Normally I take 3 a day.
Saturday Morning I took the same "cocktail"
And I do this morning/night and today - Tuesday following (day 6 of my period) I am lightly spotting. I have no (or minimal) pain, and I feel pretty damn good.
I am in shock. I have NEVER ever had a regular period - and I beleive I just had one.
The pain was totally manageable and bearable.
The bleeding was manageable and bearable.
Honestly, it was amazing.

Point of note: if you are on blood pressure medication - be careful. Cod Liver Oil and Magnesium both lower your blood pressure naturally - My BP since stopping the BCP and taking the supplments has dropped to 111/64 (I'm on blood pressure meds, I don't want to stop them without talking to my doc, but I'm seeing him thursday, because I don't want to die haha)

But seriously ladies - if you are at your wit's end, and you are otherwise failry healthy (Note: magnesium should not be taken if you have kidney function issues), you should give it a try - what have you got to lose?
linkReply

Comments:
From: (Anonymous)
2013-10-03 03:11 pm (UTC)
I have been experiencing all sort of changes the last 18 months. Night sweats irregular to non existent periods aches in lower abdomen just like pre menstrual tension but all the bloody time. Had some bloods taken to see if I was peri menapausal and they said my CA125 was slightly elevated and I was sent for a transvaginal ultra sound. was convinced I had ovarian cancer. Results came back as ovaries clear but found what they were almost 99. % sure was adenomyosis or something like that. Anyway they have referred me for a biopsy cos they say that's the only way it can be officially diagnosed. I am now worried I have some kind of cancer as I don't seen to be getting the same symptoms as u guys as my periods are lighter than before and have not had one for three months . I have an enlarged uterous and aches down front of legs all the signs of period being due but no period. Everyone I reD about seem to have this heavy bleeding . I was on progesterone only pill for five years and wonder if this has helped with preventing heavy periods but my concern is that it's cancer of the uterous and not adeomyosis. Anybody else get irregular to non existent periods and what they suspect ?? I also wonder how this biopsy is performed . Can anyone tell me how they did biopsy and was it painful.
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[User Picture]From: Allie Winters
2014-03-25 06:58 am (UTC)
with a heart filled with joy and testimonies i want to say a very big thanks to the great Dr. Charles, my life, my dream, my hope and my future was at the edge of falling apart i got married to my lovely and caring husband 8 years back and we were living happily as couples, we do have sex two times a week sometimes three time but i never conceived, then my heart was burdened and filled with worries so my husband suggest we visit a specialist in the clinic to know the actual problem why i could not get pregnant, when we got there after much test was carried out the doctor said that my husband have a low sperm count and i also have a Fibroid problem that we both can't have our own kids, when we got home from the clinic my husband was so sad about the result and very heart broken about the result at the clinic, so i told a friend the kind of problem i was facing so she said i should not worry about it, that she will help get through my problems and she gave me DR. CHARLES contact drcharlesbabyhome@gmail.com and i contacted him immediately, he told me that i should not worry that he is going to help me and i believed in him so much because my friend has told me much about him that he was the one who help her to bring back her husband when her husband abandoned her and the kids. so DR, CHARLES gave me some instruction and other things i should do and i obeyed him very well, to cut the story short at the end of the month i went for check up in the clinic and the doctor confirm that i am two weeks pregnant, i and my husband were very happy and grateful to DR. CHARLES for his help towards our family and today i am a happy mother of three kids two boys and a baby girl all thanks goes to the great DR. CHARLES Contact him today with his email: drcharlesbabyhome@gmail.com i am 100% sure that he will meet your heart desire.
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