Laura’s Pen explains what endometriosis feels like to her and how her symptoms have progressed over the years…
An estimated one in ten women suffer from endometriosis, that’s on a par with the number of women who are diabetic in the U.K. And yet, only 20% of the population have heard of endometriosis and it takes an average 7.5 years to be diagnosed with the condition (These stats were gathered from Endometriosis UK).
Rather than the anger I expressed in my last post on the subject: “The undiagnosis of my endometriosis,” I thought I’d try to share my experience, in the hope that it might help someone else out there struggling with the same symptoms.
So let me tell you my story, in the hope that it flags something up for someone out there with undiagnosed endometriosis. I am new to this diagnosis, so I can only share my own experience of the symptoms. Others will have differing experiences no doubt. I should also mention that, because I have multiple conditions, it’s hard to tell where one starts and one begins.
For me, it’s hard to pin point exactly when I first became symptomatic. The night my first period started I was in agony. My mum had started to worry I had appendicitis (although she suspected it was my first period) but it did eventually die down in the early hours of the morning, and I went to the toilet to discover my knickers were blood-stained.
My following periods, thank god, were not like that. In fact, I’ve never had that exact pain again, an intense, sickening pain that comes in waves and makes you clutch at your belly with your whole body, except when I’ve had very bad stomach bugs (I’m talking norovirus here) and even they were a scaled-down version of the period pains that first night.
I have no idea if that is what other women refer to when they refer to period cramps. That was the only time I experienced something that I think fits that description.
That’s not to say I don’t have period-related pain, oh boy, I certainly do. I should note, from the few accounts I’ve seen so far many women do have cramping type pains. One woman said her cramps were worse than giving birth.
From that day on I have always had heavy seven day long periods. I was aware I was heavier than some of my peers (I’ve never been able to rely on just tampons protecting me and wore pads at the same time) but didn’t realise my periods were longer than most until boyfriends told me so. However, I still fall within the “normal” range, so I didn’t worry about it.
I remember at a similar age to my periods starting having problems with bloating and stomach aches, and eventually I figured out that this always came on just before or just as my period started.
The stomach aches I realised were caused by the trapped gas so eventually I figured out that I needed a larger size of trousers for those days. And leggings coming back into fashion was a god send. Eventually the stomach aches died down because I found clothing that didn’t restrict me. And I forgot about it.
I also remember it becoming a feature of my life that I would feel more fatigued during my period and kind of swollen in my abdomen (although I put that down to the bloating).
A year or two after my periods started I went on the pill for my acne. And things stayed fairly stable.
Meanwhile I got ill with ME/Lyme. Fatigue dominated my life, although my period symptoms remained about the same. As this post is about the endo I won’t go into too much detail about that, except to say I was unable to go to school for a year, then returned but with about a day’s sickness absence every week. I stayed at this level for several years and then at about 19 years old I went into remission.
The period symptoms were still fairly stable, although at about the same time as the ME/Lyme went into remission I started getting IBS-type symptoms. I was too embarrassed to go to the doctor about them but I probably should have.
I would basically have very sudden explosive diarrhoea after eating. But not always. I couldn’t predict when it would happen. And it didn’t seem to matter what I had been eating.
I was always shocked by how quickly it happened, I could sometimes still be eating when I had to rush to the loo. I would have intense waves of pain in my stomach.. sometimes If my bowels didn’t start emptying immediately I would feel like I was going to throw up too.
But eventually they would, and once they had I felt shaken for a few minutes, then…fine…absolutely fine. But this mostly went away. I don’t know if, like with the trousers, it’s because I adjusted my diet or behaviour, or whatever what causing it resolved itself. It still happens very, very occasionally.
I have no idea which of my many illnesses caused it. I imagine with the endo it wouldn’t have gone away like that. But…what did happen around the same time was I started getting some pain when passing stools at the start of my period. It felt like it was happening because of that swollen-like feeling. To be honest, I didn’t think there was anything wrong with that.
Then I got ill again with the ME/Lyme and that’s when the endo symptoms also started progressing. The fatigue when I had my period was much worse. I pretty much accepted that I had to bunker down on the sofa with a blanket for my periods.
The bloating was joined by constipation and feeling the need to pass stools but nothing actually moving other than gas and sometimes mucus when I tried. I asked other ME sufferers and it seemed common for symptoms to get worse during your period. So although I mentioned it in passing to doctors, I didn’t see it as a key concern.
After a year or so into being ill I read that similar symptoms could be caused by long-term use of the contraceptive pill, so I came off it. It took six months for my periods to start again and at first I thought they were so irregular because of this…but from then it only got worse. My periods got heavier.
I could never predict how long I would have between periods. They would start really suddenly with a gush of blood in the morning. I had to throw away my fave pj bottoms because of the huge blood stain I got on them while sitting at breakfast, despite there being no blood when I went to the loo when I got up (I think my boyfriend was secretly pleased as he did not enjoy the Christmas-themed pandas that decorated them as much as I did).
If I had two periods very close together the second was generally fairly light (for me). If I had them far apart I knew it was going to be very heavy and start very suddenly. But it still would occasionally catch me off-guard with a heavy period not very long after the previous one.
Then I started getting really deep burning pelvic pain just before and during my periods. I could now predict a period was coming because of the pain. Then my knees started aching a bit more, and I started getting random facial flushing episodes much like a Niacin flush but without taking Niacin, or anything else for that matter. It would happen first thing before anything had touched my lips.
The flushing has never been explained and did go away.. but I mention it because of this. It was the starting point for my widespread pain that eventually got diagnosed as Fibromyalgia. It started with hip pain that turned out to be bursitis.
The pain from that is still intense despite physio that strengthened my leg muscles, which was supposedly the cause. Pain killers don’t touch it. I spent every night crying myself to sleep, sleeping on ice packs to try and dull the pain but it didn’t make much difference.
I then discovered a device called an actipatch which I now wear at all times and has brought that specific pain right down. I have to lay on my back at night and sit with my legs up on the sofa, and I can’t stand in one spot for very long without it hurting like hell, but with the patch I now see it as one of my lesser problems. It’s made a huge difference but within an hour or two without the patch, the pain comes back, the problem is still there.
Anyway… so that happened. Then I started getting pain elsewhere. My elbows, knees and shoulders would hurt frequently, and they would all get a lot worse during my period. I had burning knee, heel and leg pain that was near nothing during the day and intense at night. This also got a lot worse just before a period. And from this point on the pelvic pain I got just before my period reached a point where I realised it wasn’t ok.
Basically, the deep burning pain in my hips joined in with the swollen feeling in my stomach so that it was one big ball of hurt. It also spread down the front of my thighs, so that with my knee and lower leg pain flaring I ended up with about two-thirds of my body in pain at once (although the pelvis and lower abdomen was worse).
So I started mentioning it to doctors. I went back on the pill but all that happened then was I had predictable periods but generally more often so I had to deal with the symptoms more regularly.
I would be laid up by fatigue the week before my period, pain would start a few days before.. it would start suddenly and take me from getting on with my daily routine to unable to walk fluidly and crying in pain – unable to think because of the pain, unable to distract myself from the pain.
I would have to dose up on painkillers, I needed strong ones but they did actually help somewhat, but I would be away with the fairies and also need a hot water bottle on my pelvis, which I would keep on all day.
It would get better throughout the week, but it would take me a week or two to fully recover from the experience. I would have about a week unaffected by it…and then it would all start again. Both me and my partner came to dread my periods.
My ME clinic seemed to be aware my symptoms were not quite normal but left it to my rheumatologist, who I had been referred to because of the generalised pain, to investigate. He diagnosed me with Fibromyalgia after ruling out Sjögren’s syndrome because of my dry eyes and when I told him about my period symptoms, told me: “Yes, other patients report that.”
He did not ask any questions about my periods. He told me that I was doing everything I could for the fibromyalgia and seemed surprised when this upset me. He didn’t see that he wasn’t telling me: “you’re doing a good job”, he was telling me I had to live with this pain I was now experiencing.
Oh did I mention, I’d just started to have neck and shoulder pain on my right side at this point, again much worse at night. Something that in rare cases could be connected to the endometriosis but I will have to wait and see if that is the cause or not. My collection of conditions makes it hard to see what’s what.
My ME clinic were happy my symptoms had been explained. But I went back to my GP in desperation. I asked her if I could not have gaps in my pill so I didn’t have to have periods. She said no but put me on the mini-pill (Progestogen-only pill) instead to try and stop them, telling me: “I use this for some of my endometriosis patients.” Still, we both believed the rheumatologist had explained the root cause. Neither of us investigated further.
The mini pill did help, but it took about six months to do so. It actually made things worse in the short-term. I had less periods but more period symptoms, more pain. The pain in my legs at night got worse and stayed worse. I discovered from another ME patient that capsaicin cream helped.
When my periods eventually stopped completely (par a bit of spotting) the pelvic pain and the fatigue did die down, although they were still higher on a non period day than when I went on the mini pill. But that was worth it because stopping my periods stopped the extremity of my symptoms on certain points in my cycle.
And then…the pelvic pain started popping up randomly. And I still had phases of the stomach issues. My joint pain died down a lot but I’m not sure if I just changed my behaviour to not aggravate it. I use a cushion under my right elbow to help both it and my shoulder when I sit on the sofa, for example.
Then, a new symptom. Pain during sex. Actually, I think I’ve always had it but normally just during my period, and have I mentioned how heavy my periods are? I avoided sex during my period because of that. I figured it was just a normal period symptom.
But when I started getting intense pain deep in my vagina when I had sex and wasn’t on a period, I went back to the doctor and she agreed to investigate.
The smear came back clear and the cervix wasn’t sensitive itself on examination, so I had an ultrasound with a probe that goes inside the vagina. It was clear. And came with some condescending comments that made me think I was making a fuss over nothing. But my GP was still worried and sent me to the gynaecologist.
My cervix was hanging lower. I’ve been told this could be because of the mini pill, which relaxes things “down there” (I’m quoting the gynaecologist here). And I was finding that if it got hit during sex it hurt like hell. The pain would literally take my breath away (as in I would forget to breathe). And because my cervix was lower…that was impossible to avoid.
Luckily, I forgot a day of my pill and the cervix shot back up..and has stayed there. But the pain hasn’t gone. I have to be very careful about it still but more recently its changed into a deep (but not acute pain as before) but that lasts after sex. I go to sleep with my belly still aching somewhere inside.
The gynaecologist gave me this choice. You can have an operation called a laprascopy so we can see if anything is going on or you can not…and not know what is going on. He did not mention endometriosis.
I had to take a few months to think about whether I wanted the op. So I did some googling. I discovered the op is used to investigate symptoms of diseases such as endometriosis. That’s the first time I saw or heard the word in relation to myself. I did actually know a little about it, because someone on an ME Facebook group had suggested I look into it years ago when my knee pain started. I kind of wish I’d listened! But I had googled it, so I did have a vague understanding of it.
Then I started googling more and realised just how many symptoms I had, but they were all intermingled with my other conditions. The thing that jumped out at me the most was a personal account that said their pain and fatigue flared BEFORE their period started. It said this was key in distinguishing between “normal” period pain and endometriosis.
I told the gynaecologist (a different one this time) I definitely wanted the op. She told me one of the risks of the op was that they’d go in and not find anything but this didn’t mean it wasn’t endometriosis (finally the doctors were mentioning it, but only because I had started to). She suggested I also have the minera coil fitted at the same time, which may help with symptoms, which I agreed to.
And introducing the final symptom. Unknown pain somewhere to the left of my belly button that gets worse when I’m constipated, when on a period (but could be because I’m constipated then) and, since my laparoscopy, whenever I attempt to wear trousers ( the swapping of contraceptives has triggered all my full-blown symptoms again so it may be that rather than the op that has made things worse.I’ve spent a lot of time hugging hot water bottles since too.)
I haven’t figured out if the constipation is caused by whatever’s causing the pain or the pain is caused by the constipation. Luckily it accepts me wearing leggings. It came on somewhere in between my gynaecology appointment and my laparoscopy so they don’t actually know about this one yet (I also wasn’t constipated for a while before the op and had thought it had gone away). But I didn’t have any opportunity to tell anyone about this.
I went into the operation thinking it was very unlikely I had endometriosis. I prepared myself the blow of being told they couldn’t find anything wrong. (A lot of chronically ill people will know that so many tests come back negative you come to kind of expect it).
But I was told I had severe endometriosis. The surgeon said he was shocked I didn’t have more symptoms, it was everywhere, even on my liver. Still coming off the anaesthetic I told him, I do have the symptoms but I’ve been told they’re because of my other conditions.
He told me he’d see me again in three months to see if the coil helped. That appointment has just been cancelled and rescheduled. I’m still waiting to hear what they found when I’m not still cloudy from painkillers and anaesthetic. I’m pretty sure he found a cyst. I’m certain he didn’t say the word itself, but he didn’t mention something about chocolate brown.. which I now know to be the appearance of a endometriosis cyst. I have no idea where he found it.
I know from my discharge papers that I also have obliteration of the Douglas pouch, which is basically where the space between your rectum and vaginal wall becomes filled with endometrial tissue. Hence the pain during sex.
I’m still waiting for answers so I cannot tell you exactly which of my symptoms are endometriosis and which are not. I probably won’t be able to tell you for a long time yet. I have to wait see my current surgeon and then try and get referred to one of the few nhs surgeons doing excision surgery, which has the best success rates. And because of my Lyme treatment I may have to delay this a bit till my body is a bit better able to cope. It is only with successful treatment I will know what is causing what.
But hopefully, someone might read this and see something in themselves that they had been, like me, telling themselves was normal. Please don’t, like me, let it get to the point where the surgeon is shocked at how much endometriosis he found before you start pushing for answers.
It’s ok to start that conversation with your GP. It’s ok to ask women around you what their experience of their periods is (I mean friends here, strangers on the bus might be a bit much!).
You know all those points in this story where I say “I didn’t go to the doctor about it,” or “I accepted they had found the root cause,” at the same time as going to my GP in “desperation”. Those are all the points when I should have spoken up and said: “something’s not right here.”
So talk! Forget about he period taboo. I’ve found that once you start talking to other women they seem almost relieved to talk about it too.
One in ten women are estimated to suffer from endometriosis. It isn’t uncommon. It’s time we all start talking periods!
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