2020, Responses from: Dr Jeremy Meates and Prof Neil Johnson

I have had surgery for endometriosis in the past but my symptoms won’t go away. My gynaecologist has recommended a hysterectomy now but I know this doesn’t cure endo either.  I’d be interested in what ask an expert can advise.  A bit of background: I feel as though I have tried every hormone drug that’s out there and a Mirena. I’m tired, I bleed all the time and I often can’t work because of the pain.

Dr Jeremy Meates: If there has been laparoscopic removal of all the Endometriosis but there is ongoing pain then it may be arising from the muscles and nerves and a hysterectomy may not resolve this. However if there is ongoing problematic bleeding which hasn’t responded to other treatments and there is no desire for fertility then hysterectomy may be the most appropriate option. Following hysterectomy you won’t get any bleeding and you will no longer need to take hormone treatments to try & stop the bleeding. If there is uterine pain then hysterectomy will remove this source of pain. Furthermore it will most likely lead to improvement in other causes of pain from sensitive nerves & tight muscles.

Prof Neil Johnson: This is distressing – feeling like all options short of hysterectomy have been explored and still the symptoms persist.  Have other options been explored – such as involvement with a multidisciplinary team, including a specialised pelvic physiotherapist or even pelvic floor muscle Botox injections (commonly there is secondary pelvic floor muscle spasm perpetuating pain in this kind of situation); a good nutritional approach; support of medical and surgical therapy from a good clinical psychologist; nerve block injections with long acting local anaesthetic/steroid to support laparoscopic surgery; complementary therapies such as acupuncture?  In fact, although endometriosis is classically a disease occurring outside the uterus, hysterectomy can often go a long way to solving many of the problems associated with endometriosis, especially if undertaken laparoscopically in skilled hands and combined with meticulous excision of endometriosis and division of adhesions – there’s often adenomyosis hidden away which is commonly a contributing cause to persisting pain problems (hysterectomy solves this), many of the cyclical problems ease post-hysterectomy – and definitely there’ll be no continual bleeding once recovery from surgery is complete.  Although not a completely accurate predictor, it can often be a good guide to the possible impact of hysterectomy on symptoms to undergo up to a 6 month course of Zoladex injections with add-back hormone therapy (continuous combined) – if this helps a lot with symptoms, there’s a strong chance that hysterectomy will be effective, so this course of medical therapy with a view to surgery if Zoladex works can offer a lower invasive guide as to the likely effectiveness of surgery.

I have had endo and adenomyosis since I first got my period. I had a hysterectomy a couple of years ago and it helped with the pain for the first year however since then my pain has been getting worse again. My gynaecologist isn’t very helpful sending me away with pain meds saying there isn’t much else to be done. There isn’t much info about endo post hysterectomy, I am healthy and active but at a loss of what else I can do to try reduce my pain?  

Dr Jeremy Meates: Assuming that you have had a check up with your gynaecologist and he or she is satisfied that there is no immediate concern or evidence of pathology that needs to be addressed, I would suggest the following

  • Print out these stretches and try and do these daily – pelvic muscle stretches.
  • If possible do a short walk before stretching.
  • Over time try and slowly increase your exercise level but not so much that it causes pain.
  • Try and identify any factors that trigger pain and avoid them.
  • Use various forms of heat treatment to manage pain but be careful to avoid causing an injury to the skin from applying excessive heat.
  • Try and find a pelvic health physiotherapist in your area and arrange an appointment. Your physiotherapist will be able to assess the pelvic muscles and advise strategies to help with muscle relaxation. It is likely that they will be able to help with breathing and posture and have many treatment options to offer.
  • If there is no improvement with these measures then a review with your Specialist may be helpful to reassess treatment options and to assess the pelvic muscles and consider whether Botox treatment might be indicated.

Other general measures which aren’t directed toward treating the pain specifically but are likely to be beneficial plus they have no side effects.

  • Consider mindfulness, meditation, yoga or other ways to help reduce stress levels. Practice self-care and self-compassion to help break negative thought patterns and consider a gratitude journal.
  • Pay attention to your diet. Ensure an adequate intake of nutritious foods and avoid inflammatory foods, particularly sugary foods and trans-fats (ie deep fried foods).
  • Prioritise sleep. Get into a good sleep routine, ie set a ‘going to bed time’ in the same way that you would set an alarm for a ‘wake-up time’. Avoid ‘screens’ near bed-time or try glasses that block ‘blue light’.  Avoid caffeine in the afternoon. Limit alcohol late in the evening.

Finally, people will often respond differently to various medications, operations or medical interventions. What may work well for some may not be effective for others.  If there have persisting symptoms keep trying new things and don’t lose hope.

Prof Neil Johnson: This is also distressing and tricky to manage.  But again, some of the multidisciplinary options might prove helpful –  pelvic physiotherapy, pelvic floor muscle Botox injections, nutritional approach; clinical psychology, nerve block injections, complementary therapy.  In addition, we found that our paper on endometriosis self-management strategies might yield some helpful strategies – this paper was hastily put together by an international team intended to assist endometriosis sufferers during COVID lockdown – but those suffering from endometriosis recognise that self-management strategies can be helpful at any time and not just in relation to the pandemic – it won’t all be relevant, but I hope you’ll find some pearls of wisdom in this Human Reproduction Open link.

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