“It’s poisoning my insides”: Endometriosis and what its like to live with it

26th April 2022

Chronic pain, fatigue and nausea - these are just a few symptoms of endometriosis.

Endometriosis is a condition were tissue like the lining of the womb grows outside the womb and attaches to other parts of the body, for examples ovaries, bowel and bladder.

People who experience endometriosis are usually women ranging from 18 upwards.

Older women are diagnosed with endometriosis but it is more common in younger women.

The main symptoms of endometriosis are: pain in your lower abdomen or back, its usually worse during your period; period pain that stops you doing your normal activities; pain during or after sex; pain when peeing or pooing during your period; feeling sick, constipation, diarrhoea, or blood in your pee during your period; and difficulty getting pregnant.

This is not an exhaustive list.

Heavy periods, chronic abdominal pain without your period can also be a factor.

The pain can be crippling and nothing can be done during that period other than take pain killers or find alternatives, such as heat packs.

A person’s quality of life when suffering from endometriosis is reduced significantly.

A good day is when they might be able to sit up and walk around for an hour or two before feeling pain in their lower abdomen.

The next day they will not be able to move, they will feel pain from under their ribcage to their hamstring.

Many even suffer with endometriosis is other places for example, the thyroid, stomach and brain.

Many that suffer, suffer in silence and misdiagnosed – even though endometriosis is fairly well known, people are still being misdiagnosed and left to suffer because of it.

The current treatments for endometriosis are painkillers; hormone medicines and contraceptives – including the combined pill, the contraceptive patch and an intrauterine system (IUS); surgery to cut away patches of endometriosis tissue (this is limited to only a few due to scaring) and an operation to remove part or all of the organs affected by endometriosis – this is usually to do with the womb and is called a hysterectomy (this is not a cure, but a medium term solution).

Lou McHugh, a member on the Canterbury Resident’s group has suffered with endometriosis for 8 years. This is her story.

“It’s the pain really, it’s trying to have sex with my partner, it’s the constant pain that I get in my abdomen.

Lou said that she cannot pass urine, that it almost "impossible" and that this has happened for "the past two years because I’ve got endometrioma of the bladder, where the doctors have left it in there so long, eight years it’s been.

“My womb has fused itself to my bladder, so I can’t pass urine in certain ways. I’m waiting on surgery or if I’m going to be catheterised for the foreseeable.

Lou, like many women, wanted a hysterectomy to get rid of the endometriosis.

She wanted the surgery "because I would rather keep my bladder than try and save my womb but they have said they won’t do it until I’m forty-five but they might do it when I’m forty."

Lou is currently thirty two and her bladder is extremely close to completely perforating, she is nervous as she doesn't really want it to "be left so I don’t really know what’s going to be happening with that."

“It’s just a lot, it affects my life a lot. To me know its probably normal but its still is thinking of ways to be intimate with my partner, dreading going to the toilet, it's tiring to be at work and I can’t even walk up a flight of stairs because the endo pain is so crippling.

“Like I said, they left mine in there for eight years because they fobbed me off around the whole of the NHS, they even told me at one point that I had bowel cancer.

“But where they’ve left it in there for so long, actually the endometrioma lumps, where they’re made from our hormones and the hormones don’t leave the body because they’re growing.

“In actual fact at a certain point they become toxic and poison the body. So I currently have cancerous cells forming in my breasts, and I’m under the breast clinic and about to go into breast surgery on both of my breasts to have parts removed.

Lou said that even though doctors are highly qualified individuals "they’re so actually underqualified and ill-equipped clearly with this condition and everyone I’ve seen goes ‘It does take on average five to seven years to diagnose’."

“This time next year, I’m probably going to have lost my female anatomy before I’ve managed to have children, before I’ve managed to have any kind of life.”

Karen Kay is a Kent resident, who has been suffering with endometriosis for 15 years.

She was told that it was nothing but now she has stage four endometriosis.

She said: “Well, it’s been awful for years and not really being believed in your pain and passed from 1 gynaecologist to the next and long wait times and eventually given a surgery with a camera to investigate to be told stage four endometriosis had stuck my tubes to the side of my womb and had large fibrous tissue walls up to my liver.

“[I] had a couple of clearing out procedures and continuous daily strong pain relief, and the pain is always there.

“It does affect my work and even driving and to make it worse I drive for work as a carer. Awareness wise, [I] just not want to be fobbed off and a lot of people including doctors will make you feel like you’re overplaying it. But there really is no support out there.”

Credit: This Morning ITV

Danny Lee is a Kent based carer who was first diagnosed with endometriosis when she was eleven, she is now in her forties.

She told her story: “At eleven it was rare, so it was a ‘we think you have this condition’. At eleven I was told I was very unlikely to have children, so my whole life I’ve wanted children but unsuccessfully had none.

“I’m forty three now and have had two operations to remove endometrial from outside the womb, basically throughout my teenage years I suffered I had to have time off school and later time off work, where I couldn’t move my legs, my back pain was extremely excruciating.

“The endometriosis was the only thing that stopped me going to school, and to work, you know if I had a cold I would still go in and get on with it.”

“[…]The doctors duty is to give you all the information, I’ve grown up since the age of eleven and never been able to have children. I was never told about IVF and that treatment.

“Its all about the children, I look after other people because I can’t do that to my child.”

Ann Marie Bradshaw is another Canterbury Resident group member and told her endometriosis journey.

"I was diagnosed quite late. It was only after I had my second son that the doctors found a mass in my womb. They said 'it's not a priority, it's not cancerous, you're quite young, it's fine.'

"I couldn't play with my little one, I was anaemic because I was bleeding so much."

Her endometriosis has come back in the form of a cyst on her right ovary.

It keeps getting bigger each week, however the NHS route that she is on is taking too long.

This is because the cyst could pop and the dried blood can cause sepsis.

She said: "I'm lucky to have my children.

"I'm hoping the female gynae that I'm seeing will be slightly better than the guys I've seen, not that they were bad, but I'm hoping she can be more empathetic.

"I assumed when I had the original surgery to remove my womb I would be cured, but you can never get rid of it - it should be on the list of diseases to learn to live with."

"You have to really fight to be listened to, you have to push for the treatment that you want."

Women who suffer with endometriosis want to highlight the lack of support and knowledge that is out there on the condition.

Those who suffer with the condition have very little quality of life, whether it's the inability to have children or the debilitating pain.

This is a condition that needs to be talked more about.