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My Journey with Endometriosis

Discussion in 'Fertility & Trying to Conceive' started by AnishaR, Jul 8, 2009.

  1. AnishaR

    AnishaR Senior IL'ite

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    Dear IL Friends,
    I want to share my journey with Endometriosis with all of you so as to just let you know what exactly Endometriosis is and how my life changed after I was diagnosed with it earlier this year.

    As every family with a girl child in India does even my family celebrated my puberty with a grand function. But my life changed since then. I always thought I wasn’t normal and was different when it came to periods cos I couldn’t even stand nor sit those 4 or 5 days. Every month I would be the only one who would take time off from school when I get my monthly periods. Visits to various leading gyneac’s then it was told that I had a retro uterus (tilted uterus) and it’s common to have heavy bleeding. Then again back at college, work the situation was always the same that every month during periods I would suffer with severe abdominal cramps and unbearable back pain.

    Some elders at home and outside would always tell me that once I got married things would become easy. I always had believed in their words. Then after college the usual bride-groom search happened and I found my “perfect guy” and we got married and moved abroad. Initial days after marriage I started noticing a slight change in my period cycle. Before wedding it used to last for 5 days but after wedding it started to last for 6 or 7 days. I went to the doctor and everything looked normal in the sonogram and so I was sent back.

    Then slowly I started noticing a lot of changes in my body. I started growing lot of excess body hair, my periods started with spotting the first day and heavy bleeding would start 2 or 3 days later and my cycle would last for 8 days. So again different gynecologists were consulted both here and in India and nothing was found in the sonogram and blood tests. It was assumed that I was having some hormonal changes. This situation continued for more than 2 years. Meanwhile since it was 2 years since of our marriage we were desperately TTC.

    Month after month even sex started getting very painful. There used to be times when I would start screaming out of pain. We again and again visited our doctors and finally during a sonogram we noticed cysts in both the ovaries. Soon I was given a month long birth controls and was monitored. Then again for almost one and half to two years every month doctor visits happened and I was closely monitored for cysts. But my period cycles became worse from 8 it went to 9 and 10 ultimately in a 28day cycle I started spotting and bleeding for 16DAYS. First time this happened I rushed to my gynecologist, he was also shocked so he monitored me the next cycle and alas it was the same 16days. I cried and cried cos my life was not normal. I began to get worried how would conceive when I bleeding during ovulation??? Then it was decided that a Laparoscopy to be done along with Hysteroscopy. My surgery was scheduled for an hour but it went on for 5 hours.

    My DH waited patiently and my gynecologist who is one of the leading doctors in DC area told us that I have last stage of Endometriosis and that the surgery took so long as they had to remove so much of scar tissues. We were shocked we did not know what it was so we googled and the first thing that hits is Endometriosis is the lead cause for Infertility.
    So we began our research about the disease and its causes etc. Here below I’m sharing in brief what I have found our personally:

    Source: endometriosis.org; wiki and personal experience.

    What is Endometriosis?

    Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body. Endometriosis lesions can be found anywhere in the pelvic cavity: on the ovaries, the fallopian tubes, and on the pelvic sidewall. Other common sites include the uterosacral ligaments, the cul-de-sac, the Pouch of Douglas, and in the rectal-vaginal septum.In addition, it can be found in caesarian-section scars, laparoscopy o scars, and on the bladder, bowel, intestines, colon, appendix, and rectum. But these locations are not so common.

    In even more rare cases, endometriosis has been found inside the vagina, inside the bladder, on the skin, even in the lung, spine, and brain.
    Endometriosis can also cause scar tissue and adhesions to develop that can distort a woman’s internal anatomy. In advanced stages, internal organs may fuse together, causing a condition known as a "frozen pelvis."

    Common Symptoms:
    The most common symptom of endometriosis is pelvic pain. The pain often correlates to the menstrual cycle, but a woman with endometriosis may also experience pain that doesn’t correlate to her cycle. For many women, the pain of endometriosis is so severe and debilitating that it impacts their lives in significant ways.



    Pain may be felt:
    • before/during/after menstruation
    • during ovulation
    • in the bowel during menstruation
    • when passing urine
    • during or after sexual intercourse
    • in the lower back region
    Other symptoms may include:
    • diarrhea or constipation (in particular in connection with menstruation)
    • abdominal bloating (again, in connection with menstruation)
    • heavy or irregular bleeding
    • fatigue
    Diagnosing Endometriosis


    · There is no simple test that can be used to diagnose endometriosis. In fact, the only reliable way to definitively diagnose endometriosis is by performing a laparoscopy and to take a biopsy of the tissue. This is what is known as "the golden standard".
    · This makes diagnosis a challenge, and therefore experienced gynecologists should be able to recognize symptoms suggestive of endometriosis through talking with the woman/girl and obtain a history of her symptoms. For this to be effective, it is important that the woman/girl is honest with her physician about all of her symptoms and the pattern of these.

    Causes of endometriosis:

    Several different hypotheses have been put forward as to what causes endometriosis. Unfortunately, none of these theories have ever been entirely proven, nor do they fully explain all the mechanisms associated with the development of the disease. Thus, the cause of endometriosis remains unknown

    Staging



    Surgically, endometriosis can be staged I–IV (Revised Classification of the American Society of Reproductive Medicine). The process is a complex point system that assesses lesions and adhesions in the pelvic organs, but it is important to note staging assesses physical disease only, not the level of pain or infertility. A patient with Stage I endometriosis may have little disease and severe pain, while a patient with Stage IV endometriosis may have severe disease and no pain or vice versa. In principle the various stages show these findings:
    • Stage I (Minimal)
    Findings restricted to only superficial lesions and possibly a few filmy adhesions
    • Stage II (Mild)
    In addition, some deep lesions are present in the cul-de-sac
    • Stage III (Moderate)
    As above, plus presence of endometriomas on the ovary and more adhesions
    • Stage IV (Severe)
    As above, plus large endometriomas, extensive adhesions.


    Is there a diet for Endometriosis?

    Well a lot of people have published books on special Endo diet etc but none of them have actually been reviewed and accepted by any doctors or researchers.

    After Laparoscopy does Endometriosis go away?

    The underlying process that causes endometriosis may not cease after surgical or medical intervention, and the annual recurrence rate is given as 5–20 % per year reaching eventually about 40% unless hysterectomy is performed or menopause reached have been used to follow patients with endometriosis.
    The problem is once we perform the Laparoscopy it comes back to trouble us but sometimes it comes back with a vengeance

    Solution to Endometriosis:
    The best solution to Endometriosis is Pregnancy as I was told or to go on birth controls till we reach Menopause.

    My Journey continued:
    Dear IL sisters and friends I shared this experience with you because I learnt a few lessons from my diagnosis:
    1. If you ever notice a change in your menstrual cycle does not hesitate to go to the doctor immediately.
    2. If you start having long periods or unbearable abdominal pain please ask your doctor to investigate the cause of the pain.
    3. Pain during sex would be a strong indicator to ask for a sonogram
    4. If all symptoms continue don’t hesitate to ask for a Laparoscopy cos it doesn’t hurt at lot to find out what is going on with your reproductive organs.

    I sincerely pray and hope that no one ever gets this Endometriosis cos the pain that I have been undergoing has been so severe that sometimes during that pain I would always keep praying to God to kill me instead of putting me through this horrible unbearable pain month after month.

    It took me a month to recover from the surgery and it’s almost 3months after the surgery and all the 3 menstrual cycles have been very painful. Again I have started noticing the duration of these cycles it’s gone to 10 days last cycle. This month I’m planning to do IVF as it’s the only option for people like me with advance Endometriosis.

    Now the answer to the question how my Life has changed after diagnosed with Endometriosis?

    # I have learnt to accept the fact that I will not be able to conceive naturally.
    # I have started making a complete track of my menstrual cycles and frequent abdominal cramping.
    # I have joined support groups for people who are suffering like me and we help each other to overcome the pain and suffering
    # I have started volunteering in colleges and women’s organizations to create awareness about this disease as many who have Endometriosis are unaware like me and let it develop till it reaches the last stage.
    #Last but not least I have learnt to count everyday in my Life as a blessing cos inspite of undergoing so much pain God is still giving me more strength to endure this and thus I'm able to share my experience with others.

    I already posted Need your help and positive thoughts yesterday and I’m touched by all your wonderful replies. I’m crossing my fingers and hoping for the best.

    Check this out on her pregnancy announcement!
    http://www.indusladies.com/forums/baby-names-and-birth-announcements/127262-finally-im-back-good-news.html
     
    Last edited by a moderator: Mar 7, 2011
    bebo19, Rajijb and (deleted member) like this.
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  2. Gowri66

    Gowri66 Gold IL'ite

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    Anisha...

    Thanks for sharing with us and creating an awareness about Endometriosis !

    Our wishes and prayers are with you .. Be positive, calm and have faith !
     
  3. tashidelek2002

    tashidelek2002 IL Hall of Fame

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    Anisha:
    Sorry to hear what you have gone through....as another endometrosis (sufferer?) (victim?) I know the ups and downs. In my case, when I was 35, I developed (very quickly) a 20 cm endometrioma and had subsuquent surgery. The post surgical medication that I was forced to take made me ill for the next two years. Those were grim days.

    It was during that time that I started going to a local chiropractor who was researching and developing treatments for imbalances in the body and has since become internationally famous. He gave me herbal and diet protocols which I followed for a couple years and through that period regained my health and my endo became a non-issue. I am telling you this so you know there is hope even in severe cases.

    According to my readings back at that time, endo is often triggered by carbon ring compound poisioning.....DDT being one of those compounds. Burning medical waste is also a very big trigger. I was exposed to both (in USA). I think it is mandatory that DDT and other toxins be eliminated from India. In a country that values children so much, women are being poisoned into infertility.

    If I can be of help to you, please PM me when you hit your 50 quota.

    Tina
     
    1 person likes this.
  4. depressed

    depressed Bronze IL'ite

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    Great post, Anisha !:thumbsup

    It was an eye opener.
    Most importantly, it will help many women who are suffering from PCOs, endometriosis, infertility, sugar problems etc.
    this is a very informative post.

    Very well written and explained too !

    I have rated it 5 Star !

    thanks a lot !
    Love,
    "HAPPY"
     
    Last edited: Jul 9, 2009
  5. AnishaR

    AnishaR Senior IL'ite

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    Dear Gowri,

    Thanks for your wishes pa...

    Take Care,
    Anisha
     
  6. AnishaR

    AnishaR Senior IL'ite

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    Dear Tina,

    Thanks for sharing your story and giving me some more info on Endo. I shall definetly send you a pm once I reach my 50 posts quota.

    Take Care,
    Anisha
     
  7. AnishaR

    AnishaR Senior IL'ite

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    Dear Happy,

    The reason for sharing my experience like I mentioned in the original post is to create awareness amongst IL readers and friends on this topic.

    I'm happy that it was useful. And thanks for the 5-star rating:)

    Take Care,
    Anisha
     
  8. Shanvy

    Shanvy IL Hall of Fame

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    Anisha,

    hugs to you and also my prayers to you.don't lose that will power and hope, believe me it will carry to your destination.

    Can definitely relate to the pain, the injections, the fear of embarassment.

    I used to have such painful periods, with terrible weakness of the legs, and excessive bleeding to the extent my haemoglobin levels would not raise above 8 for many years.

    when i see all the experiences of people who are on ttc, i think in spite of all the sufferings, i should thank god for giving me two blessings my son and daughter.

    i was on hormonal support to sustain my pregnancies..had symptoms of Pelvic inflammatory disease that had to be treated, so no scope for normal delivery, had both c- sections, one after the due date and another 40 days ahead of the due date as my uterine wall was in danger of rupture..my kids are 13+ (almost 14) and 11.

    my problems did not end there. they could not find the reason why i had excessive bleeding. i had consultations with leading doctors in delhi and some in chennai.

    so got stuck with the pain and bleeding, so excessive that i had to change around 2 extra large within 10/15 minutes on somedays.

    One fine day had severe pain, had gone to the doctor, and she immediately wanted me to go in for a scan (by then my pain threshold had become so high that doctors take it very seriously when i say pain now..) the scan showed a cyst that had burst....it was almost 2.5kg cyst that had grown so large within a span of 1/2 years..and by the time i was operated, my heart went into a shock because of that excessive bleeding..the cyst and one ovary were removed.

    after that i was under screening for every 6 months and 8 months period ...oh the one ovary was enough to give me a period that lasted 10 days/15 days..with the same excessive bleeding...and there were days when i would be talking and just within seconds, the floor around me would be covered.:drowning..then during one of my scans there was a small cyst again. so to rule out endometriosis, i had a biopsy which gave an negative for endo..still there was no reason found for why i was getting so many of them cysts...last october though it was not my routine check up time, i had an instinctive feel to go for a scan, when i went for the scan the cyst had grown into a very big one and was again haemorogghic...so immediately had it removed. this time they removed my other ovary too..
    i still have my uterus and am on periodic check ups.

    Today, i am relieved of my periods and pains, but the side effects are many, menopausal problems of moods, flashes, joint pains and everything..now i am on a routine tests for calcium levels...

    I join Anisha, in telling you people be careful and watchful. your periods, the pains, the dates and the flow are all indicators, anything that does not go in the usual way, is a signal for caution.

    This particular post of mine is not to scare anyone but to make people aware that if they suffering any of these symptoms, it is not normal. Don't buy the story that marriage will be the solution.

    If you have children who are in the age of 12+. do take them for routine check ups. I take my daughter who is 13+ for a check up every six months along with me.

    To mom's when your child attains puberty, please go in for a check up with your own gynaec if everything is normal with your child. if she complains of pain,or if there is excessive bleeding, please refer to your doctor immediately. these days you have good treatments and catching it early is better is important.
     
  9. Gitunandakumar

    Gitunandakumar Bronze IL'ite

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    Anisha,

    Feeling very sad after reading your story. Don't worry dear you are always in our prayers. Surely you will reach your goal. Don't let you down.
     
  10. rajalakshmigopal

    rajalakshmigopal Gold IL'ite

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    My Dear Anisha,

    Iam moved to tears after reading your experience..Your post is definitely a good eye opener for all girls who are TTC.Very well written....:thumbsup

    I had to undergo Lap+Hysto for a different reason(PCO & Septate uterus) and my Gynaec had a doubt about the occurence of endo after seeing my thick endometrium and sent my endo tissue for Biopsy.Thank God....I had a good news in my store....

    I know the mental and physical pain of infertility.Having gone through various tests and advanced treatments at this age of 25,I have become a masters in fertility treatments...Iam also helping so many friends by sharing my experiences and providing suggestions.

    Dont worry! "God's delays are not His Denials".Don't think that Iam giving an old proverb.This is true....Wait for the miracle to happen!

    Dear Shanthi,

    What a painful story! Kudos to your strength...May God bless you!
     

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