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  • Shared Experiences

    Suffering with chronic pain

    Related Topics
    Endometriosis Pelvic Pain Women's Health
    Hi, I'm new to this site but joined in the hope to get some support and answers. I just recently had my fourth laparoscopy. Prior to the laparoscopy, I was suffering with bad pain for a few months and was and still are on strong pain killers such as oxycontin. The pain was a constant pain in my lower abdomen as well as the without warning sharp stabbing pain. I have previously been diagnosed with PCOS and Endo, and also a question mark as to whether I have Adenomiosis. This surgery however has only found scar tissue from healed Endo and the biopsy for Adenomiosis has come back negative. And I'm still suffering with pain and don't know what to do. Has anyone else been through this as well? And does anyone know of any other methods of diagnosing Adenomiosis other than a biopsy? I feel like I'm going mad as my gyno says everything went well with surgery. However this pain is affecting my life, my work, etc. And after all other laparoscopies, I have never taken this long to heal or had this much pain. Any help would be appreciated.
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  • Jean Hailes for Women's Health

    Jean Hailes for Women’s Health is a leader in women’s health, supported by funding from the Australian Government. We provide trusted and easy-to-understand information to … View Profile

    Hi there, I work for Jean Hailes in Melbourne (in the Education Department - I'm not medically trained and am unable to give you specific medical advice). I was wondering if you've had a look at our websites? We've got one dedicated to endo (www.endometriosis.org.au) and one for PCOS (www.managingpcos.org.au ) and we've also got info about adenomyosis on our general women's health webiste (www.healthforwomen.org.au).

     

    Regarding your question, adenomyosis can be diagnosed by transvaginal ultrasound (preferably conducted by a gynaecologist trained in ultrasound use, rather than a regular ultrasonographer.) It can also be diagnosed by MRI. However given that you've already had a biopsy, I'm unsure whether these tests are still relevant, you'll have to check with your gyno. Speaking of which, have you mentioned to him/her that the pain hasn't gone away? If the pain is severe enough to impact on your quality of life, it would be a good idea to persevere and go back to your doctor, or seek a second opinion. Chronic pain can be very debilitating and you shouldn't have to put up with it.

     

    All the best, Emily    

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  • Someone someone

    HealthShare Member

    Hi Emily, thanks for your reply. I have been back to my gyno and he is sure it is endo and adeno even though the biopsy is negative - he may just not have hit the right spot. The pain is severe and he was great in acknowledging that. I am now looking at have 6 months of injections which put you in a menopause state to see if that helps. If anyone has any advice, info, or suggestions re these injections, please let me know.

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  • Kylie Jones

    Health Professional

    Hi. I have a similar situation to you in that I have PCOS and Endometriosis as well. Are the injections you are talking about called Zoladex and go into your abdomen? If they are I have had these as well and they really helped with the pain. I'm not 100% sure it was from the injections though as I also had a Mirena put in at the same time as commencing the Zoladex injections. My recommendation with them is to make sure you are exercising and eating healthy, I put on some weight but again am unsure whether it was from the Mirena or the Zoladex. I had the Mirena in for 6 years (they last 5 years each) and only had it removed when we began trying to concieve. I had no problems (other than the weight gain) from the injections and Mirena and had minimal to no pain once the Zoladex stopped (Mirena was still in).

    I hope this helps! Feel free to ask any questions though!

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  • Catherine McCann

    HealthShare Member

    Hi Kylie,

    Sorry I haven't responded to you but thanks for your email.

    I tried the Zoladex injections - I had 2 of the 6 so only lasted 2 months.

    The endo pain went, with only a little tingle every now and then, but I got the uncommon side effect of athralgia which is joint pain. It got that bad that I couldn't get out of bed and could barely walk. However its been over 2 months since my last injection and I still have joint pain and am taking strong pain killers to be able to work and function. They are now thinking I may have endo in the bowel.

    I still have the Mirena in but it doesn't seem to have stopped the pain, so I have hit the jackpot - endo and joint pain!

    Anyway, how are you going?

    And is there any other treatments which you have tried which assisted you?

    Thanks

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  • Amelia Smyth

    HealthShare Member

    Kylie,



    This might be a long shot but have you ever tried any alternative therapies such as Accupuncture (for the pain)? IAfter several months of debilitating pain that stopped me from working/exercising etc. in the very early stages of my diagnosis (and whilst waiting for a surgery date!!) I finally tried Accupuncture and whilst my situation was no where near as involved as yours I strongly and happily reccommend it to any ladies with endo. If you are uncertain, feel free to do some of your own independant research on the subject, but I know my specialist gynocologist and the Endometriosis Care Centre of Australia (in Melbourne) work closely with chinese medicine consultants and acupuncturists.



    Just a thought…



    Amelia

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  • Catherine McCann

    HealthShare Member

    Hi Amelia,

    I have actually started back with Chinese Herbs and Acupunture again, and have noticed some relief but the Chinese Herbalist has told me it can take 6-12 months.
    Thanks for your suggestion.

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  • vegisausage

    HealthShare Member

    Adenomyosis can rarely, if ever, be diagnosed definitively with anything other than biopsying a complete hysterectomy. It is nearly impossible to diagnosis with, even mulitiple, biopsies as the doctor would be blindly stabbing parts of the uterus not knowing which where adenomyosis might be found.  Ultrasound, and other scans, at best might indicate that the uterus is an usual shape or has a thickened wall which may indicate some signs of adenomyosis but, again, can not provide a clear diagnosis.
    If you're working in education in women's health, its important that you have a better understanding of this.  We know that chronic pain is debilitating as we put up with it every day, what we need is correct information.

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