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    Phantom Pain or Endometriosis
    avatar
    snh1107 posted:
    Hello All,

    Is it possible to have phantom pain after surgery? I've had an ovarian cyst (about the size of a grapefruit) and right ovary removed about 4 years ago. Within the last 2 to 3 years, I've been experiencing pain on the right side of my abdomen during and after my period. A general surgeon classified the pain as a phantom pain. Two GYNs (went for a second opinion) have classified it as endometriosis. The suggestions I've received thus far is to take motrin and consider birth control for pain management. I only take motrin when i must. Other than that I wait for the pain to subside on its own which could be a week to a week and half after my period has ended. How can I manage this pain during and after my periods?
     
    avatar
    greg8846 responded:
    Hi;
    I have heard it referred to Phantom Pain before. I don't know old you are but since you have had a good work up birth control might be your best option. Although if you smoke or
    have habits that increase this risk with the birth control i would jus make sure you have yealry cheeck ups and get your pap smears done on time so you can keep a contstant
    eye on your health. More than likely your OB/GYN doctor have seen this a lot in there type of practice they deal with it all the time. I would think they are most likely correct, well take care of yourself.Also have a great weekend.

    Greg Armstrong
     
    avatar
    Reta32205 responded:
    SNH1107
    I am sorry to hear you have suffered so long. Has anyone mentioned adhesions? It is internal scar tissue gone haywire. A friend of mine suffers from adhesions from a hysterectomy.
    I just read the link between your cycles and the pain. Have you considered trying the BCPs to see if they help with the pain, even for a month or two? Have you noticed anything that triggers the pain? Stress, physical activity? Has anyone mentioned keeping a pain diary to track these flares of pain. Motrin really would not help nerve pain unless there was inflammation with it. Phantom pain is nerve pain and nothing really works well on nerve pain.
    I did some research on adhesions for you.

    "In an ideal recovery, surgical adhesions and scars glue sites that were cut, and the places where the doctor repaired tissues — and go no further. In some cases, post-surgical adhesions grow beyond the surgeon's initial intent. These additional adhesions may bind neighboring structures that are designed to move independently. When that happens, the post-surgical adhesions and scars can create unusual symptoms and pulls in the body, often accompanied by pain or dysfunction that can confound patient and physician alike."
    http://clearpassage.com/adhesions/post-surgical-adhesions.php?gclid=CNrs2cvun6ECFd1n5QodbAysvg

    "To exclude other causes of symptoms so that we can diagnose adhesions, some of the following tests can be used.

    • A CT scan of the abdomen can exclude hernias and some tumors.
    • An Ultrasound can diagnose endometriosis, ovarian cysts, or gallstones.
    • An Enteroclysis can evaluate the involvement of the small bowel in the adhesion process.
    After all of these tests, if a diagnosis has not been established, a laparoscopy might be used to correlate the location of adhesions and the location of pain."
    http://www.aboutadhesions.com/index.xact?id=10194&cat_id=10254&cat_link_id=10251
     
    avatar
    greg8846 replied to Reta32205's response:
    Hi Reta;

    You did a great job above im glad you did your research on the healh issue.

    Cool


    Greg Armstrong
     
    avatar
    snh1107 replied to Reta32205's response:
    Hi Reta,

    I appreciate your response and research you've provided. Unfortunately, I am familiar with scar tissue but not until my 2nd surgery has this become a problem. My first child was delivered by c-section. As a result, when the docs removed my cyst and right ovary, that is when they removed a lot of scar tissue as well. You are correct, the pain I'm experiencing is nerve pain. I'm assuming the scar tissue has returned since my second surgery. But is scar tissue controlled by BC? Or does the scar tissue aggravates endometriosis?

    I'm a healthy female in my mid 30s. I do not smoke. I've tried a BC within the last year, but that was unsuccessful. The 2nd GYN suggested that maybe that particular pill was not right for me. She suggested an IUD. I'm still on the fence about it. The doc suggested the same thing - try it for a couple months to see if it relieves my pain.


    Again, I appreciate your feedback.

    Thanks!
     
    avatar
    snh1107 replied to greg8846's response:
    Hi Greg

    Thank you for your feedback as well. I may have to consider BC for a couple of months to see if this controls my pain.


    Thank you again!
     
    avatar
    greg8846 replied to snh1107's response:
    Hi;
    You know its worth a try, if it works that will ne great if you don't have any issues with the B/C pills. Please let me know how your doing when you have time. Pleas take good care of your self to..

    Greg Armstrong
     
    avatar
    Reta32205 replied to greg8846's response:
    SNH1107,
    Since you had issues with scar tissue, then I would assume that this might be another adhesion problem. There are new, non-sugical treatments available. Please research your options.

    Have they done any of the testing I mentioned earlier? I have, unfortunately, had doctors that were quick to diagnose without doing all the testing. Then, when they write a diagnosis down, other doctors are very reluctant to change it. I was told I had IBS for 23 years, instead I had a sick gall bladder. It took 20 years to find someone to do the right test, But, they still tell me I can still have IBS, even though I don't have the right symptoms.

    Greg is right about not having any issues with BCPs. I forgot to mention this to you earlier. Please be very leery of them if you any family history of clotting, talk to your mother about this. I am one of those people that can not take BCPs or HRT because of the family history (3 relatives) and an inherited clotting disorder.

    The reason the BCPs may help with the monthly hormonal changes, is that they may help to even out these flucations. If it is endometrialosis, the BCPs may the the answer. And, it is possible that you may have to try different pills to find the right blend for you.

    I do not see where the IUD would help at all. I would do some serious thinking about that one and have the doctor explain how that will help. Do not do anything until you are convinced it will help.

    Do not be afraid to ask 1000 questions. Write down your questions and do not be afraid to tell them to wait while you write things down. Doctors will take notice and will not give you those flippant comments if your are writing them down. Or have someone else come with you to record the answers/information given.

    Personally, I maintain a PHR (personal health record), which I bring with me to each appointments. I get copies of all labs/procedures/tests to keep in my book. I maintain logs of medications. I am rather anal about all these, but it was been very helpful for me.

    Reta
     
    avatar
    Ashlynnicole88 responded:
    Dear snh1107,
    What you are describing may be post surgical adhesions. Adhesions form during the healing process, and can cause pain by restricting the movement of delicate tissues.
    Most medical professionals will recommend surgery to remove these adhesions, but while the surgery may remove some adhesions, the healing that takes place post-surgery may cause additional adhesions to form.
    There is an alternative, however called the Wurn Technique. This is a hands-on physical therapy that breaks up adhesions without surgery or drugs. It has been proven to decrease pain and increase function. This therapy also helps those with endometriosis by breaking up the links that attach endometrial tissue to sensitive nerves.
    I hope you find this information helpful. If you have any additional questions, you can visit www.clearpassage.com.

    Sincerely,

    Ashlynn Northcutt
    Clear Passage Physical Therapy
     
    avatar
    snh1107 replied to Ashlynnicole88's response:
    Everyone, I greatly appreciate your feedback! This information will give me something to think about as well as possible treatment I should consider.

    Reta, I agree with you about the IUD. I didn't understand how this would be effective. I've had an ultrasound and everything was normal. The doctor did state the only way to find out if I were really suffering from endometriosis was to have laproscopy surgery. I opted out of that b/c surgery is the reason I'm experiencing the pain I am in.

    I do believe what I am suffering from is pain from the adhensions. Question - what specialist should I seek alternative solutions from?

    Thanks!
     
    avatar
    greg8846 responded:
    Hi;

    No matter which way you decide to go be very careful and take real good care. Also from time to time please let me
    know how your doing. I wish well and good luck. but if you
    want you could hang around with all of us here on the pain
    exchange board.

    Greg Armstrong
     
    avatar
    annette030 replied to snh1107's response:
    Some IUDs have hormones in them that are slowly released over time. It may be that the doctor wishes to use this type of IUD in case your pain is due partly to endometriosis.

    I would also avoid more surgery in case you are one of those people who just develop adhesions, unless there is no other choice.

    Take care, Annette


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