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Surgery 5/1: possible adeno and endo Surgery 5/1: possible adeno and endo

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Unread 04-30-2012, 12:26 AM
Re: Women that have adenomyosis HELP!

I have also been diagnosed with adenomyosis. My dr put me on the highest estrogen pill for 90 days and since it helped the pain and bleeding and constant vaginal infections (due to the blood setting inside and not all cleaning out during my periods). Anyways I am scheduled on the 4th of May for a TVH and I have also had painful sex and keep a heating pad by my bed in order to help me sleep. My stomach has stayed bloated for so long that I have begun to think of it has my body figure. lol I have digestive issues like crazy as well. I have been taking Ibuprofen for anti inflammatory. I keep headaches like crazy and my dr says it is also a symptom of the adeno. I can tell that I have stopped taking the Ibuprofen cause the pain and swelling has intensified but I cant take it due to my surgery being 5 days away. Heating pad and Ibuprofen i took 800 mg to help with the pain especially during menstration.
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Unread 04-30-2012, 05:53 AM
Re: Women that have adenomyosis HELP!

Hi Bavy and all - yep, another sister with adeno here! Well not anymore - I had my hyster 6 days ago and am sooooooo happy I did. I am experiencing a lot of pain post-op (as Cathb911 describes, taking the time to heal!) but the pain is decidedly different from adeno pain. I was bed bound most days before my surgery, it was really hindering my life, the pain was incredible and I was getting sicker and sicker. It is a condition which once it gets chronic seems to deterioriate for many women with few options for management or treatment. However I also had a laproscopy and a hysteroscopy 7 weeks before the hysterectomy, where they confirmed the diagnosis of adeno (which had originally been picked up on ultrasound) and treated endo and adhesions. They tried inserting a mirena into the uterus to treat the adeno, (its an iud which releases progesterone in an attempt to stop the build up of a regular cycle and therefore manage adeno a little or for a time at least) Unfortunately that went very wrong and caused severe reactions, which left me with little choice but the hyster. But to be sure about the decision to go through with it, I read up a lot here, talked to friends who had the same problems or other problems and who had hysters too (universally agreed it was the best thing they had ever done for themselves!), consulted with both my GP and alternative health practioners (osteopath, acupuncturist, etc) and sought out a second opinion from an excellent surgeon here. By the time I got through all that, and no one could offer any better alternative to surgery, I was well and truly ready to get it done. I feel great for it, despite the long and (differently) painful recovery, but encourage you to read up a lot on the condition too and seek second (and third etc) opinions if you have any doubts about treatment. The most important thing is you have to feel in control of your body as much as possible, and remember knowledge is, always, power!
Unread 04-30-2012, 10:46 AM
Re: Women that have adenomyosis HELP!

scaredneedhelp, I'm sorry for the loss of your mother and that you are having so much fear. I can't say I fully understand your fear of dying on the table due to having the same issues as your mother. My husband lost his mother when he was 19 due to cervical cancer though and I know what he has gone through from the loss of his mother. I sometimes think that is the reason he has been so super supportive of my surgery and has taken such good care of me during recovery because I think in general guys don't understand what we are going through. I don't know if there is anything anyone can say to lessen someone else's fears. I hope that you will be able to overcome your fear. It's great that you haven't had any issues with past surgeries. I think it's important to keep in mind though that you are ahead of the issues that your mother suffered through with getting them taken care of now rather than waiting. I think you are brave for facing your challenge rather than blowing it off. I also wish you the very best during your journey. This surgery really puts us all through the mill with fears. I think the key to settling our fears is knowledge about what is going on with our bodies. Big hugs : )
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Unread 04-30-2012, 10:56 AM
Re: Women that have adenomyosis HELP!

JadedOne79, Sorry to hear you are having such a tough time with your adeno. I use to take a lot of Ibuprofen as well. Wishing you all the best for your upcoming surgery. Angel2012, sounds like you have really been through it with your adeno. I so agree that knowledge is power. Hoping the rest of your recovery goes well : )
Unread 04-30-2012, 03:45 PM
Re: Women that have adenomyosis HELP!

PoistiveGrace, I guess I worded it wrong I wasn't saying I was afraid to die on table because of losing my mother. I just meant that dying was my biggest fear and I am honestly not sure why I am so scared about this time seeing as I have been through several surgeries before. That's part of the reason that I am taking action now and not putting it off because I don't want to get to the point my mother did. Thank you for the well wishes. Reading a lot of the stories on here by the other women have kinda helped lessen my fear a bit. Again thank you for responding.
Unread 04-30-2012, 03:49 PM
Surgery 5/1: possible adeno and endo

scaredneedhelp, so happy to know your fears are easing up. I'm sure your going to do just fine
Unread 04-30-2012, 05:58 PM
Re: Women that have adenomyosis HELP!

Originally Posted by PositiveGrace View Post
JadedOne79, Sorry to hear you are having such a tough time with your adeno. I use to take a lot of Ibuprofen as well. Wishing you all the best for your upcoming surgery. Angel2012, sounds like you have really been through it with your adeno. I so agree that knowledge is power. Hoping the rest of your recovery goes well : )
Thanks positivegrace - it is such a journey but i feel so positive about it all and so much better after getting rid of the sick organ that my uterus had become...i hope other sisters here will feel the same when they either find something to manage their adeno or have the hyster. Its a very debilitating condition once its chronic. Take care of yourselves.
Unread 04-30-2012, 07:17 PM
Re: Women that have adenomyosis HELP!

I so feel your pain, I have been having period issues for the past 3 years, not knowing that it was adenmyosis. Was thinking it was IBS, because I have such loose bowel movements. I found out that this is a symptom of this condition along with cramping, pain, etc... I even have painful urination and urgency, so everything feels like it hurts. Sex it out of the question for me as well, the last time I was intimate, the cramping was so bad afterwards it just wasn't worth it. My surgery date is set for June 13 and it can't get here soon enough. My doctor of course made me try all the meds and a hystoscopy/dnc, all of which didn't work, so now I am just waiting for my surgery date. I wish you luck in your decision and hope you are feeling better very soon.
Unread 04-30-2012, 07:36 PM
Re: Women that have adenomyosis HELP!

Some days I feel very depressed and don't even want to get out of bed. I am very involved with my kids, so that isn't always an option. My pain level is so bad sometimes, I am living on Ibuprofin and the heating pad. Being a stay at home mom, I am the one who takes care of our house hold and the kids extra activities. With this condition sometimes I feel like I just can't keep up with everything and this bothers me. If my digestion isn't affected, my pain level is so intense that all I want to do is stay in bed. But I press on most days. I hate feeling like this and can't wait for my surgery date to get here. June 13 and I am hoping that things will begin to improve. If there is anyone else out there that has to similar issues, please share, I love feeling like I am not alone in this and there are others who understand the whole spectrum of pain. Thanks!
Unread 04-30-2012, 07:48 PM
Re: Women that have adenomyosis HELP!

Recently I found out tHAT I have developed focal Adenomyosis (confirmed by MRI) also have stage 4 endometriosis(since 2008) and both ovaries were removed 3 yrs ago...had many other treatments also
Long story short... I had 5 abdominal laparoscopys, 2 D&c and NOVASURE ABLATION mostly due to endometriosis... I went into menopause and started HRT about a year ago..
In february I was diagnosed with eosinophilic colitis..
I also have many bowel symptoms and I am not sure if it is the Endometriosis, Adenomyosis, or often times it is the colitis..
U may want to see a gastroenterologist just to make sure there is nothing else affecting your bowels
There is no cure for Adenomyosis except hysterectomy.. So get a second opinion, make sure u know all your options ..
Best of luck to u ... Take care

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