Re: my life with endo...
From: anonymous (anonymous@obgyn.net)
Sat Mar 28 03:26:32 2009
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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