Endometriosis and Me

26/5/2022

Endometriosis (endo) is a systemic, inflammatory disease where endometrial-like tissue is found outside the womb. This disease has a negative impact on the physical, emotional, reproductive and sexual health. It also affects financial security, relationships and employment/education (age dependent). Endometriosis has been found in every organ system, including the lungs and is currently uncurable. Symptoms are not limited to periods and can cause chronic pain daily even to those who do not have periods. Endo is recognised by our NHS within the top 20 most painful conditions, alongside a broken bone and heart attack.

Endometriosis can cause any of the following symptoms:

  • Adhesions and scarring
  • Systemic issues
  • Organ dysfunction
  • Infertility and pregnancy loss
  • Painful sex
  • Bladder and bowel pain and dysfunction
  • Lower back and leg pain
  • Severe bloating
  • Crippling fatigue
  • Debilitating period pain
  • Lung collapse
  • Kidney failure

The disease rarely presents alone and can also cause the following:

  • Heart disease
  • Arthritis
  • Painful bladder syndrome
  • Increase risk of certain cancers

The BBC did a survey and 13,500 women responded, with 50% saying that they suffered with severe depression.

In 2017, myself and 2 others set up National Endometriosis Survivors Support. We now have over 5,000 members on Instagram, 1,000 on twitter and 3,000 on Facebook. Before the group I had been diagnosed for 9 years. I didn’t know one other person with it. This group has changed my life. I no longer feel alone, my mental health has improved and I now have people around me who understand me. I would advise anyone to join a support group. There are so many out there.

To date I’ve had 11 surgeries. I am currently waiting for number 12. I have had 3 lots of chemical menopause. Unfortunately, I also have polycystic ovary syndrome (PCOS). I have lost 4 babies and have decided that (unfortunately after multiple attempted suicides), that I no longer wish to try for a baby as I still struggle with the losses.

Endometriosis is a difficult disease, but together we can fight back and ensure the next generation have quicker diagnosis, better care and hopefully one day a cure.

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