Tuesday 21 November 2017

Endometriosis sufferer: 'I am not prepared to have another ten years of pain like this'

A mother-of-one, Sarah Lochner has suffered with crippling pain most of her life, at 32, she was finally diagnosed with endometriosis. Here, Sarah shares her story of the debilitating condition that can cause infertility and affects up to 150,00 women in Ireland

Sarah Lochner and her son James. Photo: Dean Lochner
Sarah Lochner and her son James. Photo: Dean Lochner

Arlene Harris

Sarah Lochner knows only too well what pain feels like and how difficult it can be to get recognition and a diagnosis.

She began menstruating at just 10 years of age and since then has suffered with crippling pain for the most part of her life.

"My period started when I was ten and from the very beginning they were very heavy," she says. "They were really painful, would last for a week and a half each time and my cycle was 20 days instead of 28 - it was a very difficult thing to get used to but my mother was the same, so we just presumed it was something which ran in the family and I just got on with it."

As she got older, the pain got more severe and Sarah (now 41) missed a lot of school while she tried to cope with the almost constant painful discomfort.

"I was put on medication when I was 13 to try and control the pain as it was just unbearable and I would often be completely white from both the pain and the blood loss," she says.

"Throughout primary school I would regularly have to be taken home and then would miss lots of days during the toughest parts of my period as I literally couldn't get out of bed - it wasn't easy and without the medication, I wouldn't have been able to function at all.

"And along with the pain I was also nauseous and would often be sick, so it was pretty tough right up until I was about 18 and then my periods got a little less heavy and I was put on the pill to try and regulate my cycle.

"This helped for a while, but gradually the crippling pains returned and still no-one knew what was wrong except that I had very heavy and painful periods."

The Meath woman managed her life with pain relief and the contraceptive pill.

But she stopped taking this at the age of 27 as she had been on it for almost a decade and wasn't convinced that it was making any difference.

She got married to Dean at the age of 32 and three years later, decided she would like to start a family - it was only then, 25 years of pain later, that she was diagnosed with endometriosis.

"When I was 35, Dean and I decided that we would like to have children," she says.

"So I started discussing it with my GP and she said that if I didn't become pregnant in six months, I should come back for a check-up as the painful periods may have been an obstacle.

"So I did go back and was sent to see a consultant who immediately ordered a laparoscopy and after all those painful years, was able to tell me straight away that I had stage four endometriosis - the worst case he had ever seen.

"I was delighted to finally know what was wrong and had to undergo a procedure to 'clean up' as much of it as possible, before being put on a different form of medication which would hopefully help with the pain."

As the months went by, Sarah was still in pain so was then put into a temporary menopause to help get the situation under control before preparing for fertility treatment which would hopefully result in the family she desired.

"I was given an injection to shut down my system for three months and went into menopause," she says. "Then I had an egg stimulant treatment and was booked in for IVF to harvest the eggs and hopefully fertilise one. But my IVF treatment was due to start on a Monday and on the Friday I discovered that I was actually pregnant.

"I really couldn't believe it but was so delighted. However, I was 37 at this point and 38 when I had our son, James, so there was no chance that I would be able to provide him with a sibling.

"If I had got pregnant earlier, this might have been possible, but with all the tests and subsequent treatment, there was so little time - nevertheless we were utterly thrilled with him - and still are today."

Sarah, who is a stay-at-home mum, says the chronic pain lessened after she had given birth to her son, but the pain is increasing again and she is determined to take some drastic action.

"After I had James, the pain was reduced for a while, but it started creeping back again and at the beginning of the year, it was worse than ever before.

"I am not prepared to have another ten years of pain like this as I don't think I could cope, so I will probably have an elective hysterectomy - but I am happy for that to happen if it means the pain goes away.

"In the meantime, I had my third laparoscopy at the end of August and had the coil fitted - but the bleeding and pain continued and the exhaustion I felt post-surgery was ongoing and palpable.

"So last month, it was decided that I would have six months' injections of Decapeptyl which forces the ovaries to stop working and puts the body into a chemically-induced menopause."

The new mum was also put on hormone replacement therapy to 'lessen the effect' and will be reviewed again in 12 months.

However, it is likely that she will end up having a hysterectomy so will not be able to have any more children.

"I understand that the eventual prognosis will be full hysterectomy of tubes and ovaries which puts paid to us having any more children," she says.

"But the realisation of how lucky we are to have James always makes me forget all the surgeries, medication and therapy.

"Living with constant pain is very difficult, but mine is cyclical so I am a lot luckier than others who have pain every single day.

"But I would encourage anyone who is dealing with chronic pain to not suffer alone and ask for help - pain isn't something others can see, but by talking about it, you will hopefully come up with a solution to it."

• If you suffer from chronic pain check out mypainfeelslike.ie

* Endometriosis is a gynaecological condition which causes painful periods, pelvic pain and sometimes infertility.

* It affects up to 150,000 women in Ireland.

* It occurs when tissue similar to the lining of the uterus (endometrium) is found outside the uterus or womb. This tissue (called endometriosis) behaves like the lining of the womb and bleeds every month when the woman has a period.

* Endometriosis is commonly found on the ovaries, behind the womb and close to the bowel.

* Like the lining of the uterus, it bleeds during a woman's period and this can cause pain.

* Endometriosis on the ovaries can lead to ovarian cysts and severe endometriosis can cause pelvic scarring and adhesions - this makes the pelvic organs "sticky" so an ovary can get stuck to the back of the womb or the bowel can become attached to the ovary or womb.

* Treatment includes surgery and medication.

* For more information, see endometriosis.ie

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