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  • Jean Jordan

Are Phantom Pains And Weird Sensations After Hysterectomy - Real Or Imaginary?

Updated: Jan 12


Remove a petal from a rose to represent how a uterus can be taken by hysterectomy
Take a petal from a rose - remove a uterus from a woman

After completing my postgraduate study in pain management I began setting up my Natural Pain Solutions website as a new business to help people overcome chronic pain - wherever they lived in the world, not just in Christchurch where I have a natural pain relief clinic.


An area of interest was and still is, the often challenging phantom limb pain.

Unfortunately, this is going to be a growing problem with not only accidents, trauma, but also the growing incident of diabetic neuropathy that can cause amputation of a foot or part of the leg. And unfortunately type 2 diabetes is reaching epidemic proportions.



Making Research on Chronic Pain Available to All


My daily work involves continually learning, updating my knowledge of chronic pain and diving into research to be able to keep my readers up-to-date. One of the important aspects of my research is that I do my best to find "open access" research, meaning the whole of the research document is available to anyone.


To a certain extent this restricts information I can find. However, I think it's important to focus on my readers and your ability to validate my information.


Although plans are in place to have more research articles published as 'open access' many of the scientific journals are dragging their feet as this article in Science explains. I'll keep my fingers crossed as it would be great to have a more transparent system.







Mystery Around Phantom Pain After Hysterectomy


When I began to research this topic, the mystery of postsurgical phantom hysterectomy pain and also phantom hysterectomy sensations was actually threefold.


1. Firstly the hidden nature of phantom hysterectomy pain was evident by the way I actually came across the terms phantom hysterectomy pain and phantom hysterectomy sensations?


Phantom pain can result from the removal of any body part, of course, but it's interesting I'd never considered the loss of the uterus or ovaries that occurs when a woman has a hysterectomy.


Notwithstanding, a hysterectomy is one of the most performed surgeries on women, sometimes resulting in chronic pain after surgery.


And unfortunately the actual reasons for this emergence of chronic pain are a mystery, regardless of how the chronic pain is diagnosed or filed away in the annals of medicine!



2. My continued research with anything "phantom" had resulted in finding women going online for help with postsurgical chronic pain and where I first heard the expression hysterectomy phantom pain and phantom sensations. Many of the women wanting answers but getting little help from doctors.


I did find a Canadian physiotherapist who was providing excellent online support and answering questions put forth by these women. Therefore I assumed hysterectomy phantom pain was a medical diagnosis. Perhaps not?



3. Now the whole reason for this section of the article around "mystery". This is because every time I searched for some research to find answers from the medical practitioners about women’s post hysterectomy experience.


Women seemingly having periods or should I say period pains, or menstrual cramps and all of the stuff that goes with having a period. When the equipment for such things is no longer in the body?


However, all of the questions or should I say the answers, according to medical research and medical practitioners, as to why the pain is there, is really quite straightforward. Post-operative pain is due to scar tissue or to nerve damage or perhaps the tissue is still not fully healed?



 


Finding Support for Post Surgical Pain


I think one of the worst challenges you can have if you're suffering with ongoing pain after having a hysterectomy, or any chronic pain years after surgery is -


"What can I do to help myself?"

Home alone or just setting off for an important meeting and your pain decides to remind you that it's part of your daily life.


Before I continue with this article I'd like to share some valuable information with you. Natural Pain Solutions NZ, was brought into being for just this need that all people have if they have to live, or prefer 'not to live' with chronic pain.


Throughout this website, stories and natural solutions are there to read, where other chronic pain clients share their own stories and the easy solutions they used for self-help.


Also you may like to have a look at these this interesting page:





 


Reasons For Chronic Pain Years After Surgery


Tissue healing generally takes, or is recognised to generally take about three months, nerves do take much longer but certainly are not 3, 4, 5 or 10 years, when some women still have chronic pain. Within many of these articles there was very little help or advice given to women, which is surprising as hysterectomy is such a common operation.


Finally, for this mystery of missing information there was certainly lots of discussion and questions around phantom pain after a hysterectomy amongst non-medical articles and websites that supported groups of women, but as I said, the terminology was not really mentioned in medical research.


Figures given by Brandsborg and in her review of research that chronic pain after hysterectomy can happen from 10 to 50% of women, where 5 to 50% may be neuropathic pain. What interesting figures but seemingly such an enormous range can this give us a picture of what is really happening? This excellent review by Brandsborg about Danish women can really be of little help, statistically speaking.



older woman who may be living with phantom pain after hysterectomy
Hysterectomy before or after menopause needs research

I know that if my hairdresser put prices up 50% I certainly wouldn't be too happy. But if she put them up 10%, together with an explanation of why she needed to do this, I think I'd be quite accepting and happy to pay the 10%.



Yet an article from the University of North Carolina states about 2 to 3% of women develop a new pain problem after surgery, claiming this comes from scar tissue? Perhaps they are not taking a long-term view or follow-ups.


It is accepted that estrogens have neuroprotective properties and obviously removal of reproductive organs is certainly going to affect estrogen, and progesterone in a woman's body. Hence early menopause can be a contributing factor to many symptoms after her hysterectomy.




 


Implications For Brain Function After Hysterectomy.


Initially when I planned this article it was to say medicine, or the medical community doesn't seem to be paying enough attention both in research and patient care to some of the women who have had a hysterectomy.



Brain-uterus-ovarian connections impacted by hysterectomy
Hysterectomy may impact the brain and cognition

When I work with chronic pain my primary consideration is what is happening in the brain, what is happening with the neural connections or neural plasticity, because neuroplasticity means change thereby suggesting pain relief is possible.


Therefore, when I found the paper by Koebele (2018) and also the information from my previous article on chronic phantom pain, is it time to consider the impact that hysterectomies have on a woman's brain? Not only in explaining the impact the neural changes and also the risk of such things as early dementia to those planning an operation but also to have treatment plans that involve the brain.



Uterus And Ovaries Connection To The Brain



hysterectomy phantom pains and sensations as brain has connections to removed uterus
Brain and nerve connection to uterus removed during hysterectomy

One area to consider when undergoing hysterectomy is the impact on the brain and cognition. It may be thought that the sole purpose of a uterus is for pregnancy, making a non-pregnant uterus redundant, especially when a family is completed. Therefore a solution to gynecological problems is to simply remove an organ.





It is easy to think that a none pregnant uterus is dormant, however the uterus has brain connections - an ovarian - uterus - brain system that becomes interrupted when the uterus is removed even if the ovaries remain. Some recent research suggests a possible increased rick of early-onset dementia for women who have a hysterectomy.



 


Conclusion

This article has taken a direction that really didn’t surprise me, as my treatments basis is to always explain to chronic pain patients the way that neural connections build-up to revisit pain memories. This is like hearing a TV advert jingle that can be in our head throughout the day, regardless of how we try to concentrate on something else. A pause in our activity – back comes the jingle into our brain, just playing away in out head!


Therefore, when I found the article on the concerns about disruption of the brain, ovaries and uterus connection it added more weight to the missing link to the treatment of chronic pain whether due to hysterectomy surgery or developed in other ways. We as practitioners need to first explain the brain’s involvement (or I’d put it stronger – control of your pain) and then give chronic pain sufferers tools to break down and rebuild neural networks. The brain is neuroplastic – just like plasticine that children play with – so it is pliable and can be changed.


Finally, I hope the ideas here will give you pause for thought. One of my clients Al explains how understanding his phantom pain and learning take home techniques changed his life.





Jean Jordan

Want to find simple effective ways to begin to break down those pain neural networks? This is where I can help! Ideas can be found in the articles on my website. You can sign-up to regular updates or spend time using some of the collection of self-help techniques. After over 20 years of having my own pain clinics pain I started Natural Pain Solutions online business to reach more people, rather than one person at a time. Therefore when I completed my postgraduate pain management studies I wanted to spread the word about holistic self-help techniques that people can use at home. Learn more about me here.





References:


Brandsborg B, Nikolajsen L. Chronic pain after hysterectomy. Curr Opin Anaesthesiol. 2018 Jun;31(3):268-273. doi: 10.1097/ACO.0000000000000586. PMID: 29474214.


Brainard J. 'Transformative' journals get booted for switching to open access too slowly.

https://www.science.org/content/article/transformative-journals-get-booted-switching-open-access-too-slowly


Koebele SV, Palmer JM, Hadder B, Melikian R, Fox C, Strouse IM, DeNardo DF, George C, Daunis E, Nimer A, Mayer LP, Dyer CA, Bimonte-Nelson HA. Hysterectomy Uniquely Impacts Spatial Memory in a Rat Model: A Role for the Nonpregnant Uterus in Cognitive Processes. Endocrinology. 2019 Jan 1;160(1):1-19. doi: 10.1210/en.2018-00709. PMID: 30535329; PMCID: PMC6293088.


Phung TK, Waltoft BL, Laursen TM, Settnes A, Kessing LV, Mortensen PB, Waldemar G. Hysterectomy, oophorectomy and risk of dementia: a nationwide historical cohort study. Dement Geriatr Cogn Disord. 2010;30(1):43-50. doi: 10.1159/000314681. Epub 2010 Jul 30. PMID: 20689282.


Rocca WA, Bower JH, Maraganore DM, Ahlskog JE, Grossardt BR, de Andrade M, Melton LJ 3rd. Increased risk of cognitive impairment or dementia in women who underwent oophorectomy before menopause. Neurology. 2007 Sep 11;69(11):1074-83. doi: 10.1212/01.wnl.0000276984.19542.e6. Epub 2007 Aug 29. PMID: 17761551.


Rocca WA, Grossardt BR, Shuster LT, Stewart EA. Hysterectomy, oophorectomy, estrogen, and the risk of dementia. Neurodegener Dis. 2012;10(1-4):175-8. doi: 10.1159/000334764. Epub 2012 Jan 21. PMID: 22269187; PMCID: PMC3702015.

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