Endometriosis/laproscopy

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Hello

I've had problems with irregular periods, abdominal and period pain, crippling back pain and other symptoms for years.

I had a laproscopy and hysteroscopy on Friday which showed 'no obvious cause for pelvic pain' my main question today is has anyone had this result on their first lap and gone on to have a diagnosis of endometriosis?

I ask this because my surgeon has now discharged me from her care after this, without speaking to me at all. I saw her before surgery and that's it.

I've spoken with ladies i know with endometriosis and they've been astounded that I don't in fact have it, my symptoms match to a T. Even my doctor was happy to diagnose me with endometriosis with treatment of depo injection, it was only at my insistence of surgery for definite answers that this has come about. The gynaecologists I've seen have also said that most likely it would be endometriosis.

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  • Posted

    Hi Betty, I'm sorry this post is going to be long.  I'm so sorry you are having these problems.  Let me start off by saying your doctor doesn't seem to be a very good one.  Especially seeing as she discharged you from care without speaking to you.  For 3 years I told my doctor I thought I had endometriosis.  Her response was "why do you think you have that?!" In a very rude tone.  Finally, she did a laproscopy and found that I did have it.  She removed what she could, but could not remove it on my bladder and colon as it is too dangerous to remove in those areas.  When the pain continued, she only suggested to me one treatment.  Lupron shot.  I refused as the lupron shot had too many side effects and I am very prone to depression with birth control pills in the past and Lupron users have experienced this side effect a lot.  She made me feel like I was an idiot and I finally got an appt with a specialist for endometriosis.  The specialist has treated me now for 3 years, on my first visit he said "endometriosis is a horrible disease, and only you know what pain you are in.  So I'm going to give you the options for treatment, and you tell me which one you would like to go with, and if one doesn't work, we will move to the next one."  He gave me options of progesterone, doing lap again so he could see exactly what's going on, estrogen therapy.  And he said he would not suggest lupron because it's a short term fix for a long term problem.  I chose to start with the progesterone.  It helped for about a year, and then he had to switch up medicine.  He said with endometriosis sometimes the disease will do that.  A medicine can work great and then stop working.  Anyhow, now I'm back on the progesterone (letrezole is what I take) and I still have pain, but it's more manageable than it was.  From my story, I just wanted you to know that I also had a doctor that didn't know what she was doing.  And a specialist is really where I suggest you try and go.  Endo is such a horrible disease and you may have it in places your doctor didn't look in the lap.  I wish all doctors were as sensitive and knowledgeable about endo because constant pelvic pain is horrific and really beats you down.  Maybe talk to another doctor and ask to see a Pelvic Floor specialist.  Most of them are endo specialists as well.  I hope everything gets better and you find the answers you are looking for.  You are in my thoughts! 

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    • Posted

      Hello

      Thank you for your reply, it is helpful to read other people's experiences, no matter the length of the post.

      I am sorry to hear of all the issues you have had to contend with, i hope you continue on this path of manageable pain ('managable pain' how ridiculous, eh!)

      I have since found out that a friend had her first laproscopy with my surgeon and was given the all clear and told it was 'all in her head' fast forward to 2017 and many laproscopies later, she had now had a last resort hysterectomy, my faith is quite shaken.

      I will be requesting a new consultant as even if it isn't endometriosis, i am still in pain and should not have been discharged!

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    • Posted

      I am so sorry your faith is shaken, I have felt that so many times with this disease.  Too many times to count.  It's so hard to get some doctors to listen, but praise God when we find a good one that listens and knows that not every patient fits into a "one size fits all" treatment plan.  I pray you find a good doctor that listens and finds out what's going on.  Not sure why pelvic and stomach pain is so hard to diagnose and treat.  Sending hugs and prayers of healing your way!

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  • Posted

    Betty, did you post before under a different name?  I ask because I hate to repeat myself.

    If this hasn't happened already, you need to be checked for both Crohn's disease & ulcerative colitis.  The pain & some symptoms are identical.

    Find out if there was a visual record made of the lap & hysteroscopy.  If yes, get a copy of it before it is destroyed, to share with endo & gastro specialists.

    Hope they figure this out soon.

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    • Posted

      Hello

      No I haven't posted before, I only had my surgery on Friday and joined the site shortly after. I presume someone has asked the same question though?

      I have since found out that a friend had her first laproscopy with my surgeon and was given the all clear and told it was 'all in her head' fast forward to 2017 and many laproscopies later, she had now had a last resort hysterectomy, my faith is quite shaken.

      Thank you for your advice. I will get in touch with them and find out.

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    • Posted

      Hello again

      I just called and the nuslrse I spoke with said she did not know of them recording surgeries so I've no answer there, I will try the Secretary tomorrow.

      Upon speaking with my friend, she asked why I only had two incisions (one on my left side and one on my belly button) she has always had three. The third apparently for an instrument to move organs.

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    • Posted

      I can't answer about the number of incisions.  Back in the at Stone Age i had a laparoscopy and there was onky one incision, ruined my decent looking navel.    For a gallbladder, i had 4 incisions so ,,,  There Isn't always a visual record, depends where you  are, whether It's a teaching hospital, etc.

      That's not encouraging news about your friend.  But if he says you don't have endo, go to a gastroenterologist.  If they rule out all intestinal issues, as them for the name of a bettet surgeon or endo doc.

      Sorry to say this may take a while?

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  • Posted

    Oh.. So sorry. I never experienced these. U will be fine.
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