The invisible illness: Bright smiles and yellow flowers belie the bravery of the participants in a recent
endometriosis forum at Corinella.
By Geoff Ellis
BACK in the eighties my then partner was often crippled for three or four days every month. Not bedridden, just lounge bound, lying on her side, wrapped around a pillow with a hot wheat bag against her stomach, with another wheat bag warming in the microwave. She’d been living this ordeal since she was 13. Under the “don’t tell, don’t ask” understanding we didn’t talk about it much, if at all. It was all women’s business back then.
A couple of weeks ago I went to Corinella Hall to listen to women who struggle against a bastard condition called endometriosis that needs more publicity. Dr Scott Pearce, a leading specialist surgeon, was centre stage, with three women beside him, talking about their battles with the condition, called endo for short.
BACK in the eighties my then partner was often crippled for three or four days every month. Not bedridden, just lounge bound, lying on her side, wrapped around a pillow with a hot wheat bag against her stomach, with another wheat bag warming in the microwave. She’d been living this ordeal since she was 13. Under the “don’t tell, don’t ask” understanding we didn’t talk about it much, if at all. It was all women’s business back then.
A couple of weeks ago I went to Corinella Hall to listen to women who struggle against a bastard condition called endometriosis that needs more publicity. Dr Scott Pearce, a leading specialist surgeon, was centre stage, with three women beside him, talking about their battles with the condition, called endo for short.
Dr Scott Pearce Endo is a chronic condition in which cells similar to those lining the uterus grow in other parts of the body. They form lesions or patches that attach themselves to other organs. They can cause severe pain at any time of the month, often every day, along with irregular and long menstrual periods.
The forum was facilitated by Ania Nowakowska, one of the presenters on the stage. Now in her 40s, Ania has suffered from endo since puberty and has been told she is at stage 5 of the disease.
In December, an internal ultrasound revealed that her endo and adenomyosis had grown like wildfire, covering her bowel, attaching one ovary to the outer wall of her uterus, and growing a new cyst on the other ovary. Another operation would be too risky, as it could potentially cause permanent damage to other internal organs.
“Once I found out my ‘stage 5’ news,” Ania says, “I thought to myself ‘now what?’. And then it occurred to me that I needed to do something for others, so they don’t have to go through what I and so many others go through, so they don’t reach stage 5 or 4 or even 3 …”
The forum was facilitated by Ania Nowakowska, one of the presenters on the stage. Now in her 40s, Ania has suffered from endo since puberty and has been told she is at stage 5 of the disease.
In December, an internal ultrasound revealed that her endo and adenomyosis had grown like wildfire, covering her bowel, attaching one ovary to the outer wall of her uterus, and growing a new cyst on the other ovary. Another operation would be too risky, as it could potentially cause permanent damage to other internal organs.
“Once I found out my ‘stage 5’ news,” Ania says, “I thought to myself ‘now what?’. And then it occurred to me that I needed to do something for others, so they don’t have to go through what I and so many others go through, so they don’t reach stage 5 or 4 or even 3 …”
 Ania's story The photo of me sick and then made up (above) is a sort of tradition with endo women to post on social media to show how endometriosis is an invisible illness. The same woman on the same day. Same pain levels. But we have to put on a happy face and keep on going. Endo stops your life in its tracks. You cannot commit to going places, because you don’t know if you will have a flare up. Bleeding can go for 10 days non stop. You bleed through maternity pads, clothes and mattress. I am lucky to have the luxury of working from home, being a freelance designer. The pain affects your head, back, abdomen, legs and even feet. You cry and you work, because you have no choice. There have been days I wasn’t able to walk my dog or to feed myself. You can’t play with your children, if you have any. Going to the toilet can cause a great amount of pain. For many women sex is incredibly painful and this can lead to relationship problems, distancing your partner. Not all women feel comfortable explaining why, even in 2021, so their partners are left in the dark, feeling unwanted. It is not just a reproductive health condition, it is a whole-body condition. Often it leads to deep depression. You can’t work. And yet you look so normal. I could talk about this for hours. It’s my life and I know I am not alone. | She started a Facebook page around a petition asking the government to add endo medication to the Pharmaceutical Benefits Scheme (PBS) schedule. Over 500 women signed the petition in three weeks. Then she started planning the endo forum at Corinella. She especially wanted to reach out to girls experiencing periods for the first time who don’t understand why they are in so much pain. When she advertised the forum on Facebook she was overwhelmed by how many local women have endo or know about it. That’s how she met Christie and Tammy, two women who helped organise the forum shared the stage with her last week. Her GP, Dr Natalia Chatsionok, was also in the audience. There were 60 people in that hall with another 180 Zooming in. The stories from the stage spilled over into the audience. One woman talked about being a human guinea pig since her first period, age 13. Another spoke of her pain since her first period at 11. Her agonies are pulpable. She’s 47. Another woman is on a three-year waiting list for an op that might end her ordeal – or make it worse, a result which is totally beyond my imagination. Almost everyone in the audience was on the edge of their chair, or crying, or hugging someone. There is no known cause for endometriosis so there is also no cure for it. Laparoscopic surgery can determine the location and stage of the endo. The surgery then often includes either an ablation procedure (burning out the endo) or what is coined the gold standard in endo surgery – excision (where the endo is cut out with the roots). Neither of these is a cure, as endo grows back, but they can ease the pain for an unpredictable time period. Other treatment options include expensive pain relief or hormonal therapy. A hysterectomy does not cure endo. Studies suggest that one in ten women of reproductive age has endo, though many are not aware of it. |
One message from the event was that if you have bad period pain you should see your doctor, and don’t be afraid to challenge their diagnoses. Many GPs are not well versed in symptoms and treatment of endo. Patients are often told that painful periods are normal. One woman had visited seven GPs before endo was diagnosed; she stormed out of one consultation after telling the GP to get fucked. Gone are the days when women need to suffer in silence.
Ania says having an invisible illness is very isolating, so it’s vital to let women with endo know they are not alone. The Facebook page allows women to share their stories, seek non-medical advice and learn how other women cope.
In Corinella they were able to meet Dr Pearce and ask questions. Women bonded and agreed to meet up regularly as a way of supporting each other. In that sense alone, it was a great success.
Ania says having an invisible illness is very isolating, so it’s vital to let women with endo know they are not alone. The Facebook page allows women to share their stories, seek non-medical advice and learn how other women cope.
In Corinella they were able to meet Dr Pearce and ask questions. Women bonded and agreed to meet up regularly as a way of supporting each other. In that sense alone, it was a great success.