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Re: my life with endo...
From: anonymous (anonymous@obgyn.net)
Sat Mar 28 12:01:39 2009
i meant to include this re: progesterone
johnleemd.com
At Sat, 28 Mar 2009, anonymous wrote:
>
>Hello "Young Ladies",
>
>Boy, that makes me feel old by calling you guys "young ladies" but being
>that you are both 20 and I am 44, well....looks like I have 24 years on
>you! I just wanted to chime in with my story and to let you both know
>that you are NOT ALONE!
>I can't really say I ever had heavy periods but I can say that I had
>painful ones. After having two children (who are now 19 & 21)both via
>C-Section, and being far beyond ever having anymore, along with severe
>abdominal pain that I just couldn't stand anymore, I had a total
>hysterectomy in 2006. Of course my GYN found endometriosis during my
>Lap prior to hysterectomy and after hysterectomy pathology also show
>adneomyosis. My uterus was found to be twice the normal size - can you
>imagine? No wonder I was in so much pain along with the endometriosis
>and adhesions everywhere because I had 2 c-sections.
>Anyway, after my hysterectomy, of course recovery was literally several
>months because it was major surgery, I felt better than I had in years,
>and I mean years and years! It was awesome. Not only did I not have
>pain but I also didn't have periods ha ha. Everything was great until
>about a year ago (1 and a half years after hysterectomy) when I started
>having urinary & bowel problems, such as; trouble emptying my bladder &
>frequent UTI's, along with pain with bowel movements. I had been to my
>doctor several times but they couldn't ever find anything. Then blood
>started showing up in my urine - not visually but microscopic found in
>urinalysis. I also started having pain on my right side, severe lower
>back pain and abdominal pain - kinda like period pain. My primary sent
>me to a Urologist who did some tests which included abdominal CT-scan
>and cystoscopy. Both which were normal except he noted that my ureter
>was narrowing. With no answers to my symptoms, dummy me finally decided
>maybe I should go back to my GYN. On my first appointment he asked me
>if I had told my urologist that I had endometriosis. I said, "no, why
>would I?" He said, "because endo can recur even after hysterectomy".
>WHAT? I never knew that. Maybe he told me when I had my surgery over 2
>years ago, but if he did I wasn't listening because my pain was gone and
>I was happy. Either way, he did a transvaginal ultrasound and guess
>what? I have Endometriosis and it is on my urinary tract and bowel. I'm
>am scheduled for more surgery to remove this nasty reocurring painful
>disease.
>
>I feel for both of you because you are very young and living with Endo
>is quite a challenge. The reason I'm writing is to let you know that
>you should always keep in mind that even if you have had Endo removed,
>it can reoccur. From what I read, sometimes a GYN misses it because it
>can be microscopic and other time they just don't remove it all which
>just leads to more pain later on. I will probably have more surgery to
>remove whatever I can have removed because I do not want to take the
>chance of the Endo ending up ruining my kidneys, which I have read
>about. I have opted not to take Lupron or birth control pills mainly
>because I have already had my children, already had a hysterectomy and
>from what I read the medicines only subdue the pain temporarily but
>don't get rid of the disease. I want the disease gone.
>
>Good luck to you both and remember you know your own body, follow your
>gut instinct and just try and make the best descisions for your own
>circumstances.
>
>A Mom & Endo sufferer.
>
>At Sat, 28 Mar 2009, anonymous wrote:
>>
>>Please try this site for some additional support, I think they have a
>>group for women under 25.
>>
>>PLEASE ALSO send your records to someone like the CEC for a free records
>>review, if you'd consider traveling there. They are amazing, and you
>>possibly could get some pain relief as so many other women have!
>>
>>Have you heard of the IC diet? it cut down some pain for me, and some
>>other health tips on this site helped
>>
>>endo-resolved.com
>>
>>At Fri, 27 Mar 2009, anonymous wrote:
>>>
>>>hey megan,
>>>
>>>Tears were running down my face when i read your message because i know
>>>exactly how you feel. I am 20 and every word you said is exactly
>>>EXACTLY how i feel!!! I have been struggling with endo for 9 months and
>>>the doctors just now figured out that it was endo in the first place. I
>>>had surgery last November because they were sure i had IC and not endo.
>>>I am waiting for another surgery to take place but the in the mean time,
>>>everyday is such a struggle! Somedays I wake up and have minimal pain
>>>and then other days i cant get out of bed. I feel like i am taking
>>>loritabs all the time. I have been married for 6 months and my health
>>>has definitely put a strain on my marriage. My husband is so supportive
>>>but i still feel so alone. Im tired of complaining about it. Im tired
>>>of " How are you feeling today" knowing that the answer is i feel like
>>>shit!!! Im tired of being in pain. Im tired of being tired. I used to
>>>be so happy and full of energy. I had a great sex life and now i feel
>>>like all of that is gone. I know is sounds so dramatic. I am a very
>>>strong person but there is only so much u can take. I hate calling out
>>>of work because if it was my choice i would be at work if i was healthy.
>>>I feel so alone and sad....
>>>
>>>Alex
>>>
>>>At Wed, 25 Mar 2009, Rosa wrote:
>>>>
>>>>At Wed, 18 Mar 2009, Megan wrote:
>>>>>I felt all those same emotions. They are all natural... You feel like no one REALLY understands. I went from being super skinny to now super chubby. Years and Years of treatments have taken a toll on my body and mind.
>>>>I feel sometimes that its not fair...
>>>>Not fair that we have to know what it feels like to be in menopause in
>>>>our twenties. That we have to be ok with the fact that infertility may
>>>>be an issue. That when we call off from work because of the cramps that
>>>>we may seem weak compared to all the other women that can handle their
>>>>monthly periods and function perfectly.
>>>>I sometimes don't realize how I've changed. Physically and emotionally,
>>>>I still feel like the witty skinny girl is inside and I don't recognized
>>>>the funny chubby girl on the outside
>>>>
>>>>So lets just make a toast to good health!
>>>>
>>>>>Hi everyone,
>>>>>
>>>>>My name is Megan, and I was diagnosed with endo in January. I am
>>>>>currently on Lupron. My doctor cut out all the endo that he could. I
>>>>>have a really great doctor that ha lots of experience and is a wonderful
>>>>>surgeon. I'm a college student at UCF, and I missed the first six weeks
>>>>>of school, because I spent time in the ER, had the lap, and then
>>>>>recovered, and adjusted to this "new life of mine." I don't know how
>>>>>anyone else feels, and I haven't had any real conversations with anyone
>>>>>about their endo, and I don't think that someone who doesn't have it
>>>>>like me could understand. Almost every morning I wake up, I feel like
>>>>>shit. It feels like my stomach is all messed up, obviously it's not my
>>>>>stomach, but that's what it feels like. It's like a dull steady ache
>>>>>and then some sharp pains. After I take lortab, it makes it a little
>>>>>bit more manageable. I am trying to be positive and motivated and
>>>>>smile, but I just feel so beyond discouraged and hopeless sometimes.
>>>>>Obviously, I'm dealing with both adjusting to my new life with endo and
>>>>>the lupron side effects. I know that many people are passionate about
>>>>>how much they hate lupron, but I'm not asking for opinions on that,
>>>>>because I've made a well-informed decision about what treatment to
>>>>>pursue for me. I posted once about me being on lupron on another
>>>>>message board, and a whole bunch of women attacked me about making that
>>>>>decision, blah blah. I just feel like I'm stuck in my own body. I used
>>>>>to be in shape, and I've put on like 20 pounds, I know that's the
>>>>>lupron, but the other side effects aren't too bad. The hot flashes
>>>>>such, and the insomnia sucks, too, but I can handle that. Does anyone
>>>>>else feel discouraged? I'm 20 years old, and I'm going to have this for
>>>>>the rest of my life! It seems like there's no light at the end of the
>>>>>tunnel, because doctors really don't know much at all about endo. They
>>>>>have theories about where it comes from and what to do about it and why
>>>>>it keeps coming back, but no concrete anything. I'm not blaming them, I
>>>>>just wish that there was more endo awareness, like if people put as much
>>>>>money into researching endo as they do cancer, I think we'd be ahead of
>>>>>the game. Endo isn't a death sentence, I'm not being overly dramatic or
>>>>>anything, but it really sucks. I'm sick of people questioning me and
>>>>>not understanding. I'm sick of complaining about it to other people.
>>>>>I'm sick of my parents asking me how I'm feeling, because it's never "O
>>>>>hey mom, I'm feeling great," and I'm sick of hearing myself complain
>>>>>about it. I'm just sooo frustrated, and it gets me so down sometimes.
>>>>>My mom and my dad are both very supportive and they try to understand.
>>>>>My dad is so sweet, he tells me that he wishes he could take the pain
>>>>>for me. I have a few close friends, and one of them really gets it, but
>>>>>the rest of them don't. I have a boyfriend that I've been with for over
>>>>>two years, and he has been by my side every step of the way. These past
>>>>>few months have been really hard, not only physically but emotionally as
>>>>>well, and he's helping me deal with it. I don't think that talking to a
>>>>>counselor or someone like that would help, because I honestly don't
>>>>>think that they will know how I feel, I don't think you know how it
>>>>>feels 'til it's you. And I definitely know that stress makes the pain
>>>>>worse, because I think sometimes I get so worried about how I'm going to
>>>>>feel when I wakeup the next day, and what I'm going to be able to do
>>>>>that day, am I going to be able to get to school and work? That that
>>>>>makes the pain and stress of the endo even worse. Lately I'm just
>>>>>feeling really down about my endo situation, I'm not clinically
>>>>>depressed or anything, just really frustrated, and sometimes sad and
>>>>>angry that this is my life now, and it just seems like it might not get
>>>>>much better...ever, until they find a cure.
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