Re: ok, everyone, I need the benefit of your 20-20 hindsight

From: Jo Eslick (wallamara@hotmail.com)
Sun Oct 28 06:24:40 2001






Hi Cathy  

I remember your post, and I commend you on being so candid about your pain & experiences so far, and for understanding how fortunate you are that you can use our "20/20 hindsight" as you call it

There are a few things that I need you to understand, firstly I am not a medical person, just an adhesions sufferer with a "retro scope" - my term for 20/20 hindsight. I am so pleased that you found us and have asked some very sensible questions; my own motto is "a stupid question is one that isn't asked."

OK, from your description and intensity of pain, I was wondering if anyone has ever considered that you have Endometriosis?  You describe having pain with ovulation, as well as after climax.  I know that these can be symptoms of endometriosis, which wasn't diagnosed for me until after first my uterus was removed & a little over twelve months later my ovaries!  So firstly start researching Endometriosis, if you want information, use the search option at the bottom of the adhesions board.  To help you get started look at this site: ENDO FACTS -- from *Endometriosis Interactive Support & Information*...by Jennifer Lewis

You have already formed some idea of what you are facing in the future depending on how you decide to pursue your symptoms and then which course of treatment you decide upon.  I note also that you mentioned the possibility of cancer, and it is a valid concern.  I think it appropriate to discuss your concern with your GP.  There is a blood test that will eliminate the possibility of ovarian cancer, here is the link for an article regarding this point IMPORTANT>>>CA-125 test<<< COPY and TAKE THIS to YOUR DOCTORS...

The next thing is the ultrasound; in my experience (I have had a very large number of ultrasounds) the technician has always used the censor over my entire abdominal region, as well as looking at the kidneys on either side of my back.  I have adhesions covering my bladder and therefore have a limited capacity to retain urine; this always makes an external ultrasound very limited in the information it can provide. (When your bladder is full, it pushes the reproductive organs up closer to the abdominal wall, making it easier for the ultrasound to pick up a clear image). There has NEVER been an occasion when I have not then been asked by the technician if I would agree to an internal (vaginal) ultrasound.  This has always proved to be the more effective way of "seeing" what is happening. (Yes this can be very uncomfortable & sometimes painful, BUT if you can relax as much as possible, the discomfort can be reduced considerably.)  If you are able to get a copy of the results, I suggest you do so, I also believe you need to contact your doctor & explain that you are anxious to find out the results of this test.  I am always amazed that in the USA, you all seem to wait for the doctor to call you.  Here in Australia, we contact our doctors office, explain that we are awaiting results of a test, our file is then given to the doctor & we are switched through to discuss the results.

I too live in a rural area, and understand completely about the limited choice available to you in the way of specialists.  In my experience (via the long hard way of-course) I have discovered that you will need to be prepared sometimes to travel some distance to find a doctor who has enough expertise & experience with your particular problem. ...This most definitely means knowing about latest medical break throughs, procedures etc.  To find out that again... it is a matter of asking question after question.  Don't stop asking questions until you feel satisfied that you have been given ALL the information and that you can see the "picture" in it's entirety.

Obviously my next piece of advice is to avoid surgery, only using it as a last resort.  You said yourself that you feel that at this point, your pain isn't interfering in your life as much as it "appears to do" for us.....

I think that if you seek to find out the opinion of doctors (I mean get several opinions, don't settle for just one), if endometriosis is a consideration, then perhaps you should seek confirmation of that diagnosis.  Often endo is not diagnosed until it is in an advanced stage, and has already inflicted a great deal of damage to internal organs & or the reproductive ones in particular.  I started complaining about pain with sex when I met my husband, I was 18, and I'm now 38 and was diagnosed with endo in April this year.  I have had 4 c-sections, which have added to my considerable amount of adhesions, BUT we don't know how big a part the endo actually had in creating that scar tissue.

At the end of your email that you wanted to know what we would do if we could go back, knowing what we now know...how would we proceed?  Well Cathy, I would certainly start with collecting all my medical history, tests, scans, doctor's reports etc.  I would then seek appointments with SEVERAL specialists for an opinion.  I would have complained and been more candid with my GP when I was younger, before the pain became so bad, that my whole world was turned upside down.  I would have questioned the necessity of my first c-section; I would have also been more insistent during my second pregnancy that I would give natural birth a better and longer opportunity to work.  I would have also asked my doctor what ALL the risks of childbirth are, and what the alternatives available were and how they could affect both the child & me.  When my period started to get heavier, more painful, closer together, I would have been more forceful and research this problem, instead of accepting various GP opinions, that "some women are just born that way, and have to put up with a "little" pain in order to become mothers!"  If I had known that my bladder & uterus were STUCK to my abdominal wall, I would have looked for further alternatives before accepting that hysterectomy was my only choice to relieve the unbearable pain, and the constantly growing drain on my "life force"  When it came time to have the surgery (I know it was necessary, I chose the wrong gyno), I would have ran out of the office of the doctor who operated on me and disregarded my history and the fact that I had FOUR c-sections when he didn't even want to LOOK at my notes and my history, I told him how I was, how I was struggling to loose weight and getting no where.  His next sentence should have sent shivers up my spine "You really should try to loose some weight before the surgery", BUT I was so ill & so desperate by then, I didn't think I could last the extra time waiting to get in to see the other Gyno in town.

I guess you will have to decide if you think your pain is worthy of further investigation, my gut feeling for you Cathy is yes, seek a diagnosis and then PLAN your treatment in partnership with your GP, YOU and the specialist surgeon, if that is indeed the course of treatment you all decide on.  Cathy, these doctors work for you, you PAY for their "service" make sure that you are getting the BEST  "CUSTOMER SERVICE" available to you within the medical community.

If you require help with research and information on doctors etc within your state, Then Helen Dynda will be your champion, just post a message on this board, and Helen will amaze you with her ability to find all the information you require on any particular or general idea you wish to pursue.

Best wishes to you Cathy, I am so pleased that you have visited our little community here on the board.  Don't under estimate your pain and discomfort however, because if you are seeking advice and researching possible reasons for your pain, then it IS interfering with your life and requires a resolution.  I look forward to hearing about your progress in finding the help you need.

Love & gentle warm hugs

Jo (Australia)

Please feel free to email me if you want to ask me private and specific questions.

 


Enter keywords:
Returns per screen: Require all keywords: