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Endometriosis

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martha79229
martha79229

HI,

I have been having issues for a very long time now but just recently about a year now, my OBGYN mentioned it may have Endometriosis. He prescribed a birth control pill for three months but I honeslty didnt take it becuase of the side affects. I went the my follow up after the three months and he had me take an ultra sound. I've had two ultrasound and one CT Scan but nothing is seen other than two small fibrois. I have always suffered from cysts and one time during my teenage years I had one rupture. 

I have my consultation in Feb to discucss a laparoscopic. Been reading a lot about it and I"m getting very nervous. I'm also contiplating in mabye getting a total hystorectomy but I'm not sure what is the right choice. I am 40 now and not planning on having any kids.

any suggestions from anyone will help. 

0 likes, 16 replies

16 Replies

  • BloominUterus
    BloominUterus martha79229

    Posted

    Hi Martha.

    Sorry to hear you're going through this.  My suggestions?

    Have the surgery.  One of the following will happen:

    1.  They'll open you up and not see any Endometriosis. Boo.

    2.  They'll open you up, see Endometriosis, not know how to remove it, and stitch you back up. Boo.

    3.  They'll open you up, see Endometriosis, KNOW how to excise the implants and free up the adhesions.

    I'm hoping for Option Three!  Have you asked your surgeon how experienced they are at laporscopic surgeries AND removing Endometriosis?  If they don't know how to remove the implants, you may want to postpone your surgery and get a referral to someone who does.  Otherwise, they'll just open you up, confirm you have it, stitch you back up, and refer you to someone else.

    Also be sure to ask if they are confident enough in removing your Endometriosis if it is areas other than your pelvic area - what if it's on your bowel or other places?  Do they work with other specialists if they DID have to remove it from your bowel or other organs?

    Don't be scared.  Well, that's impossible.   You can be scared.  But be informed and ask questions.  It's your right.  You're paying them for these services and deserve to know these answers smile 

    Please know that a hysterectomy is NOT a cure for Endometriosis.  If you have implants remaining after your hysterectomy (it can grow in places that aren't just your uterus or ovaries - I have it on my diaphgram and liver, as well as the usual girly bits), your symptoms may persist.  BUT, that being said, my doctor says a hysterectomy (although it doesn't cure Endo) may help with period cramps.  Some Endo sufferers HAVE said that their symptoms went away after a hysterectomy, too, though.  Every woman will respond differently.  But if you're 40, I'd say skip the hysterectomy and just ride it out 'til you hit natural menopause.  It will be easier on your system.  

    Endo implants may not show up on ultrasounds or CTs.  But you already knew that.  Again, I'd say go forward with the surgery.

    If you'd like thoughts on the post-op recovery, I'm here.  My surgery was June 30, 2014.  I had a robotic laporscopic surgery (using the DaVinci machine).  They went in through my belly button and a small incision near my right hip.

    Take deep breaths.  And take care.

    ~Lisa

     

    • martha79229
      martha79229 BloominUterus

      Posted

      thank you for responding.....my fear is that by having the Endo, it might get worse instead of better. did that happen to you?
    • BloominUterus
      BloominUterus martha79229

      Posted

      Nope.  My symptoms started in my early teens. I grew up being told it was normal by family and doctors.  When I was 35, I went in for a surgery (June 30, 2014) to remove a cyst and, like magic, it was all Endometriosis.  My doctor was shocked at how bad it was.  But nearly 20 years of uncontrolled growth...

      After my surgery, I had two periods before I started my medication treatments.  Both of those periods were the shortest, easiest, non-crampiest periods in my life.  I was stunned.

      So, mine has become better for many reasons:

      1.  I now know it WASN'T normal.  I wasn't crazy. I wasn't weak.  That alone has been an incredible "better" for me mentally.

      2.  I went through six months of Lupron Depot treatments.  It's not for everyone.  And it's not easy.  But, as my doctor said, it "shocked my system" and hopefully drastically slowed any recurrence of my Endo.

      3.  Immediately after Lupron Depot, I started a continuous birth control pill and have been on it for a little over a year.  I haven't had my period since September 25, 2014.  I haven't had the cramps, the pain, the endless bleeding, lying in fetal positions and crying for days.  I have some side effects from the pill, but they are way easier to deal with than my Endo pain.

      4. I've started eating healthier and cut out foods that are known to cause inflammation.

      But, I know you've tried birth control pills and stopped because of the side effects.  So this may not be helpful to you...

      I still have the occassional flare-up.  And am having some bowel issues.  But, yes, things are better for me now.  At least for now...

      I hope the same for you.

    • martha79229
      martha79229 BloominUterus

      Posted

      I'm very much into holistic and natural herbs. I really do not like taking any meds given only because of all the side effects they have. it's supposed to help you for one thing but ends up desrupting other things and then needing to take medication for that. 

      I dont have any bowl issues. what do you mean when you say you have bow issues? My symptoms are pelvice pain, lower back and it seems to be my leg/thigh now. I'm not in a lot of pain. it's more discomfort and an accasional ouch type thing when I get up from sitting or after working out.  I can still function will. I do get very fatigued by the end of the day though. 

      I was told lupron is so bad for you in regards to the side effects. I was told I dont have to take it if I dont want too. I'm not planning on taking anything after the surgery. 

      I'm thinking of changing my diet. I've read what you eat can help minimize the symptoms. I'm also thinking of doing accupunture. But NO meds of any sort. 

       

    • BloominUterus
      BloominUterus martha79229

      Posted

      I've heard accupuncture, diet, and holstic herbs can help a lot of women with their Endo symptoms.  There are a lot of books on exactly that topic, too.  I hope you find the right balance for you smile

      I'm waiting on some testing to be done to see if they think I have Endometriosis on my bowels.  It can cause issues like constipation, diarrhea, cramping, bloating.  It could be something else, which is what the tests will rule out. 

    • martha79229
      martha79229 BloominUterus

      Posted

      YES...I've read it can still come back after surgery. sad

      I do suffer from very bad bloading. Usually feel it more around my cycle. I thought it was because of my cycle. Hopefully its just due to that and not Endo. sadsad

      good luck and hope all is possitive news for you. 

  • aitarg35939
    aitarg35939 martha79229

    Posted

    Hi Martha

    I'm sorry you're going thru this. Would the laparoscopy be your first cut-skin surgery, or have you had problems with other surgeries?

    • martha79229
      martha79229 aitarg35939

      Posted

      no. it's not my first cut-skin surgery. I have had a laproscopic once before but for something else.

       

  • heathrum
    heathrum martha79229

    Posted

    The only way to diagnose endometriosis is with lyproscopic and if you have it they can try to remove as much as they can during the procedure. I was in the same position 5 years ago I did it after a couple years of pain. Unfornately I waited to long I also had prolapse uterus which they wouldn't have known without that surgery. It is a minor surgery! If I had done it sooner I wouldn't be in as much pain as far as the endo. I would not recommend hysterectomy unless there's other problems it can increase risk of heart problems without ovaries and scar tissue nerve pain.
    • martha79229
      martha79229 heathrum

      Posted

      I have been having issues what seems like forever but never has anyone mentioned endo until just a year ago so who knows how extensive it is at this point. 
    • heathrum
      heathrum martha79229

      Posted

      I wish I had lyproscopic earlier and I would've if they knew my pain was real. It would probably be reassuring to you to know what's going on and start treatment options if necessary. I hope all turns out well. Try not to be scared of the procedure it wasn't too bad. If you have any questions let me know...
    • martha79229
      martha79229 heathrum

      Posted

      I only hope there isnt too much damage. I read if it's gone to your bowls that you an get a temprary colostomy....is that true?!?!?!

      I"m into holistic and natural herbs...I'm also thinking of changing my diet. Maybe that will help. I am not planning on taking anything after the surgery. I dont trust meds. too many side effects and then we begin to have other issues because of the meds that are given. rolleyes

    • BloominUterus
      BloominUterus martha79229

      Posted

      I haven't read that, or heard of any gals who had a bowel resection going through that.  But who knows; each person is different. smile
    • heathrum
      heathrum martha79229

      Posted

      I have it in my bowels and lymph nodes only thing GI does is colonoscopy. I'll ask him next time I see him if he does that if it gets bad enough. I do physical therapy in a warm pool and mediation. I also do organic mainly milk, eggs and meats. Which seems to help. My physical therapist mentioned some type of massage that she heard helps I will ask her what kind. I'm the same but when the pain gets too bad I take a norco. I was told NSAIDS help best but I'm allergic to them. I'm still looking up food that help inflammation such as cinnamon. Anyone that knows what kinds of food help with that would be useful.
    • BloominUterus
      BloominUterus heathrum

      Posted

      I've heard that cinnamon (like you already pointed out), honey, turmeric, tomatoes, leafy greens, olive oil, nuts, fruits, and fatty fish all help fight inflammation.
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