Living with endometriosis

Heavy periods, chronic back pain and difficulty getting pregnant: these can be symptoms of endometriosis, the condition where pieces of tissue from the inner lining of the uterus become implanted outside of it.

The adhesions can stick to the fallopian tubes, ovaries, the bowel, bladder, rectum – even to the lungs in rare cases – with the pelvic area being the most common site for them. It can also affect the uterus itself, with endometrial lining tissue becoming embedded in the muscle of the womb wall, leading to pain and heavy bleeding during the woman’s monthly cycle.

Women may be affected to different degrees, says Dr Ahmed Omar of Beacon Care Fertility.

“Like any illness, it can vary. There are four stages of it: minimal, mild, moderate and severe, and some women may be asymptomatic and may not be aware they have it. Other women might have significant endometriosis, which causes a significant amount of pain. Fatigue and depression can also be the results of endometriosis. Some women have been struggling with these pains, which can be quite crippling, for a long time.”

Mr Omar believes the condition is quite common. “In one recent study of diagnostic laparoscopies (keyhole surgical procedures), for example, 20% of women had some degree of endometriosis,” he says.

Cyclical clues

When it comes to endometriosis, the giveaway clue is chronic back or abdominal pain at or near menstruation.

“Women might have severe back pain at a part of their menstrual cycle,” Dr Omar explains.

“Sometimes it could be pre-menstrual pain, sometimes it can be during the period itself. This type of pain pattern is one of the big giveaways. There are other causes of back pain and irregular or heavy periods, of course, but investigations will help with diagnosis.”

Difficult to diagnose

A diagnosis of endometriosis can sometimes be difficult as the symptoms can vary significantly and are shared by other conditions,, like pelvic infection or ovarian cysts.

The main way of diagnosing the condition is via a laparoscopy a small camera is inserted into the pelvis through a small hole around the belly button.

“This enables us to be able to look inside the pelvis itself for endometriosis which does have a certain pattern.

“It looks like gunpowder lesions or spots (black, dark brown or blue) inside the pelvis but you can also see a lot of adhesions. These mean scar tissue inside the pelvis so unfortunately you might get the fallopian tubes and ovaries stuck to the bowels as well.”

Endometriosis can be deep within the pelvis and an ultrasound scan or MRI may be required to aid diagnosis as well.

“In general, your GP will refer you to a consultant gynaecologist for a laparoscopy initially if he/she suspects endometriosis,” he says.

Treatment

Removal of spots of endometriosis and of adhesions may take place if they are discovered during a laparoscopy, Dr Omar adds.

“The spots can be removed from the pelvis by burning them thermally, or a laser may be used,” he says. “You can also dissect the adhesions and cut them away from the organs but sometimes, if the endometriosis is at a later stage, the surgeon might do the surgery later when the patient would come in properly counselled.

“If the endometriosis is mild or manageable it is usually dealt with at the time, with the patient’s consent given for this beforehand.”

Fertility

Endometriosis doesn’t necessarily cause infertility and a diagnosis of endometriosis doesn’t necessarily mean that you won’t be able to have children.

“Women with endometriosis sometimes need assistance to have a child, yes, but other factors would also be involved,” Dr Omar explains. “A woman’s age is very important because that determines the quality of their egg. Age is the most common cause of fertility issues in older women.

“Endometriosis, however, can have an impact on fertility by reducing a woman’s ovarian reserve. The unhealthy endometrial tissue can lead to less healthy eggs and less eggs means less selection, so with treatment like IVF, endometriosis can have an impact.”

A woman’s fallopian tubes being blocked because of endometriosis can also be a problem but this can be solved.

“Once you bypass that by doing IVF, the chances are very good but the chances of success are affected by other factors, as mentioned above. The thing is to get endometriosis sorted surgically, then if you need help getting pregnant after that you seek it.”

Dr Omar always tells patients that endometriosis is a poorly understood condition.

“Some women might have extensive endometriosis but still be able to achieve pregnancy but some women with mild endometriosis may have difficulty,” he explains. “We don’t know why that is yet.”

Have a baby sooner

If endometriosis is present, women are advised to think about having a family sooner rather than later.

“We always advise them to be as proactive as possible because endometriosis can be a progressive condition,” he says. “It can return again, even when you treat it successively, so we would advise women to be proactive about completing their family.

“We also say that, because some of the treatment for endometriosis (to relieve pain and heavy bleeding) involves the woman taking hormonal medication. This hormonal treatment would be more or less contraceptive (stopping the normal cycle from happening and therefore stopping the endometriosis being active) so they would need to decide on the number of children they want so that they may be able to have a more permanent treatment or long-term treatment for endometriosis once their family is complete.”

Pregnancy is actually considered to be a treatment for endometriosis, he says.

“That’s because it stops the cyclical changes every month but, of course, pregnancy is not only about endometriosis. It is about you being ready to have a baby.

“If you have endometriosis and you are thinking of having a family, we would say don’t delay too much as in another year or two or three the endometriosis might be worse and that could have an impact on your fertility.”

Mr Omar also says that more single women with endometriosis are now choosing to have their eggs frozen.

“They are concerned about the degree of their endometriosis and how much of an effect it might have on their future fertility and are trying to safeguard their ability to have a child in the future.”

Claire is a mother of three from Kildare and was diagnosed with endometriosis in 2012.

“I had surgery for it in New Zealand as I was living there at the time,” she says. “I had been on the pill since the age of 19 but I stopped taking it in 2010 in order to give my body a break from it. It was very much a gut instinct to do that. That’s when my periods got worse. I was waking in sweats thinking, ‘Jesus Christ, I’m going to die – what’s going on?’ and passing really heavy blood clots. It was quite scary, but it was because of this break from the pill that I finally realised my period pain wasn’t normal. The pain was really intense and I was taking a lot of painkillers. My GP referred me on for a laparoscopy in June 2012. By that stage I would be out of work for at least two days each month and be taking a lot of painkillers.

“After the procedure, the surgeon told me that my left ovary was quite twisted and it was stuck to the side of the uterus and the whole uterus was covered in adhesions. He told me they had saved the ovary. He also told me that if I was thinking of starting a family I’d need to do it sooner rather than later, so I became pregnant in November 2012 and I’ve been pregnant or breastfeeding since then.”

One of the lucky ones

“I am one of the really lucky ones in terms of endometriosis sufferers because I got the surgery and then straight away got pregnant before it had a chance to grow back. They say that because of the hormones when you are pregnant or breastfeeding the endometriosis doesn’t grow. My cycle didn’t return for some time because I was breastfeeding – five or six months on my first two children, but on my last it was 18 months. When my periods started again the pain was very, very intense, unfortunately, so I am on a waiting list now to get surgery again. But for COVID, I would have considered going back to New Zealand for the procedure as the waiting list is so long here.

“Looking back, I know that I would have experienced the symptoms sooner had I not been taking the pill and perhaps I’d have got it sorted sooner,” Claire continues. “Luckily, I was able to have children and keep my ovaries and uterus, but I know a number of women with it who couldn’t have children and who have needed a hysterectomy to try and see if that will help them.

“I thank my lucky stars that mine was diagnosed in time. If I had got that diagnosis in Ireland it would have taken a lot longer to get treatment on a public health waiting list and perhaps I would have lost my left ovary and perhaps that’s the one with all the good eggs.

“I am looking forward to not ‘being in a heap’ each month. I know the surgery will make me more comfortable. Some women don’t have age on their side and the longer they are on the waiting list the less chance of them having a successful pregnancy because of the condition and their age.”

For more information, visit www.beaconcarefertility.ie or The Endometriosis Association of Ireland on www.endometriosis.ie. For support and help, see frendo.co.uk.