The End of Endo Taboo
March is Endometriosis Awareness Month, but we still don’t seem to see or hear much about the chronic illness that affects many women throughout the UK. Are people still too afraid to talk openly about all the unpleasant things that their own bodies do, or are they just uninformed due to a lack of primary knowledge from professionals?
35-year-old mum of two Sally Altass fromBarnsley in South Yorkshire opens up to Parallel about her long-term struggles with endometriosis, discussing which treatments have and haven’t worked, what other kind of support is available, how it affects her family life, and what gets her through the worst days.
Can you tell us a little about endometriosis?
Endometriosis is, in layman’s terms, when you have your period you don’t just bleed down and out, you bleed in and around. No one quite knows why this happens, but basically on the outside of your uterus you start to get little legions of endometriosis which look like little blisters.
There’s four stages of endometriosis, there’s Stage One being minimal, Stage Four being everywhere inside your uterus, around your pelvic system, and around your reproductive system, but it depends. Each stage of endometriosis you have doesn’t reflect the level of pain you may feel. A woman with Stage Four endometriosis may not feel any pain, whereas someone with Stage One could be crippled when she ovulates because it’s about where the endometriosis is. If it’s on a nerve ending – imagine a blister being on your foot and just rubbing continuously, you can cushion a blister on your foot, you can’t cushion a blister that you can’t see inside of you so its constantly rubbing against that nerve ending and constantly sending pain.
How does endometriosis affect you on a daily basis?
It makes your body bloat. When I had my periods I could put on half a stone in weight just from the sheer bloat, I could go from a size 12 to a size 16 and back down again. When you have your period your lining thickens and then it comes out, so that lining is thickening everywhere else as well because it’s behaving exactly the same as the lining of your uterus. It’s really gross, and normally when I talk about it people just normally go “NOPE! That’s enough! That’s enough!” so its weird to actually be able to talk about it and no one going “euurgh!”
It just builds up and builds up because there’s nowhere for it to go once its inside your pelvic system and it causes adhesions, so it can cause your uterus to stick to your bowel and your bladder, and also your ovaries can stick to stuff, it can stick to your fallopian tubes so it can cause infertility. It’s one of the leading causes of infertility, but if a gynaecologist says to you that you have endometriosis it does not mean that you are infertile, it means that you may be at some stage and it could lead to it if the endometriosis isn’t treated properly.
What kind of treatments (if any) have you had for it?
I’ve been on the pill for pretty much half my life. I was put on the pill at age sixteen because of how ridiculous my periods were even then, I’d only had periods for two years at that point and I was put on the pill to try and control them. Of course at sixteen that’s a massive stigma because people think you’re going to be sleeping around and stuff like that, whereas it had nothing to do with that.
I’ve been put on a hormonal treatment called Zoladex which puts you into a temporary chemical menopause. It’s also a treatment that’s used in chemotherapy for breast cancer patients, and so they are given, along with the Zoladex, Hormonal Replacement Therapy so that they don’t have too many horrible side effects. With endometriosis, because it’s trying to stop the hormones, we can’t have the HRT. So I’ve known people who have had Zoladex for sixth months, every six months, for three or four years and they’re only in their early twenties. It can make your hair get thinner because it’s stopping your hormones and oestrogen. It’s a horrible, horrible treatment, and I was on that for three months. It can also give you osteoporosis because it can make your bones weaker.
I’ve had two surgeries called laparoscopies which are used to diagnose and also treat endometriosis. The first one was in 2004 when I was diagnosed with endometriosis, the second one was in 2013 and they said they couldn’t find any endometriosis, which was a little bit strange. I’ve also had the Mirena coil (IUS) in for five years which is supposed to stop your periods, but I still had my periods and I still had them irregularly.
Last March (2014) I had a hysterectomy to remove my uterus because of the amount of bleeding that was happening – even with the coil in, and the hormonal treatments I was on. That was great because I was no longer bleeding, but a hysterectomy is not a cure for endometriosis if the endometriosis isn’t removed from the places outside your pelvis that it can get to because it can be found on your lungs, brain, bowels, kidneys and bladder.
In January this year when I went back to the gynaecologists they agreed to have a look inside me again to see if they needed to remove my ovaries. They did remove my ovaries because they had cysts on them, which I’ve found out since was a mild case of
polycystic ovaries (PCOS) and it took twenty-one years to find that out; its ridiculous. But since I’ve come out of the surgery I’ve had a bit of recovery pain, but at the moment – touch wood - I‘m not in pain, though I have had a very low dose of HRT to try and make it a bit easier on the hot flushes and the memory loss, but if it goes up in dose it may encourage any endometriosis patches that have been left to flare up again, and if so they will reproduce their own hormones and just basically cause me havoc again. So basically at the age of thirty-five I’m having the menopause and having to put up with it because otherwise I’ll just be in a state of being in pain all the time, and I’ve had two years recently of being in pain every single day, so right now I’m loving not being dosed up on morphine, its great!
Are there any alternative treatments?
People say to treat endometriosis you can treat it with diet – you can’t treat it with diet. I went from a size 20 to a size 10 because I was controlling my diet so thoroughly because I was scared of a flare-up, but I was still in pain. I still couldn’t get up in the morning. I still couldn’t go to the toilet without crawling. I still couldn’t take the kids to school because I was in so much pain. They also say that pregnancy is a treatment for endometriosis – it isn’t. I got told before I had Devon that I was infertile because I had endometriosis. I got pregnant with Devon within the year. The couple of years in between having Devon and having Morgan was fine, it wasn’t too bad, but then since having Morgan it got worse so I got the coil put in because it started to get bad again. But the coil just ended up not helping me at all, it was like I didn’t have a coil in. I had to have a bucket of salt water to put my bed sheets in every other day because my bleeding was that bad, and there’s no way to control it. So that’s not a treatment.
People say you can treat it with exercise, because you know when you get a bad cramp they say go for a run; go for a walk it will help. The problem is with endo’ pain, if you can stand up you’re lucky. And if you can stand up and move two steps without puking up because you’re in so much pain you’re lucky, so exercise ain’t gonna help it because you can’t physically move anyway because you’re in that much pain! So all the holistic approaches, I’ve tried them and – for some women if it works for them that’s great, if they’ve got mind over matter that’s great. But if the endo’ is on a nerve ending, going for a run isn’t going to help because it will just inflate it more and rile it up more so… no. Not holistic.
What gets you through your bad days?
Sewing started getting me through my bad days when I was getting to the point where I couldn’t concentrate for long enough to write or I couldn’t concentrate on the TV for long enough because I was just in too much pain. Weirdly, for some reason I could concentrate on sewing because it was so intricate it completely took my mind off it. I’d prick my hand with the needle every now and then and go “Ouch… Oh that’s nowt!” And just carry on with that, so it’s been positive in that aspect, but before the sewing I used to colour in really intricate doodles, like geometric designs and art therapy things, and before that I would try and write, which went alright for a bit, but then I sort of realised that going to gigs was getting impossible because I’d just end up puking on someone’s head if they happened to just pass me as I was having a flare and it would look like I was drunk so that went out of the window.
Within the endo’ community its very much split by those who are told they’re infertile and believe it, and so they hate everybody with children. Every single pregnancy announcement is like a slap in the face personally to them, and between those who – like me – have been told they’re infertile and have gone on to have children, so I try and say never say never. But in a lot of groups if you mention that you’re struggling to look after the kids because you’re in pain, you will get jumped on. You will get told, “I can’t believe you’re so selfish, that’s such an inconsiderate thing to say when I can’t have children and I would give anything to have children, and children would make me get through my day!” Yes, I know I’m lucky to have kids, but it doesn’t stop me being in pain. I can’t just go up to bed and pull the duvet over my head and cry because I’m in pain because I’ve got them two [children] to sort out.
So the community is supportive on one half and envious on another?
Yeah, its like one person said on Mother’s Day, “It’s like everyone who is announcing that they got presents from their children is personally insulting me.” I’m like… okay? So we’re not allowed to celebrate our children, and the fact that we have got children even after most of us were told that we would never have children? So to have children is an amazing thing, and if we celebrate that we’re insulting you? Hmmm.
I try and think of [the children] to get me through the day and the fact that I am lucky to have them, but it doesn’t stop me from being in pain. Some people would be saying to me, “Just think of the kids, that should be enough to get you through any bad day.”
It’s like if someone chopped your leg off, and you’ve still got kids to look after but you’re missing a leg, having kids isn’t going to magically make it grow back again is it?
Yeah exactly! That’s it absolutely exactly. And sometimes as well, I’ve seen some ladies have partners who aren’t very understanding because endo’ hurts when you have sex, and even when you’re not due on your cycle you tend to bleed afterwards as well so its not very often [my partner and I] can be intimate. It’s so taboo talking about it, you get a lot of women’s partners saying, “Oh for fucks sake, you’ve got pain again?” Whereas he’s been so understanding. He knows when it’s hurting, he knows when I’m in pain, so he knows when to just be there for a cuddle and never puts me under pressure. So that gets me through as well, knowing that I have a really understanding partner, because its better than a lot of women with this condition have. So that does help me get through, even the days when he’s doing my nut in I’ll just sit there and think: well it could be worse!
What advice would you give to anyone with endometriosis or to anyone who suspects they may have it?
I would advise them to go to their GP – this is especially if they suspect they have endometriosis – they need to sit down and tell them everything that’s been going on with their periods. Provide a timeline if they can proving that the pain is cyclical, but also it has peaks and troughs. Endo’ pain isn’t just a bad period, it’s more than just a bad period.
Go to the doctor, ask to be referred to the gynaecology team, but to make sure that it’s a specialist endometriosis gynaecology team because I was told by different gynaecologists different things. My first gynaecologist told me that I would never get pregnant, then when I did get pregnant he told me I was cured. When I went back to [the hospital] to have another laparoscopy they completely missed obvious endometriosis, and I know that they missed it because after my hysterectomy my new gynaecologist showed me the pictures of the endo’ that was really obvious on my uterus. I’d also recommend going to endometriosis-uk.org because they have a brilliant website giving information and they list all the specialist centres in the UK. For anybody in the Barnsley area I would recommend going to Jessops in Sheffield, they are specialists. They know what they’re doing, they know what they’re looking for and they know how to treat it properly as well.
I would recommend them to – just before they agree to be put on the hormonal treatment – actually ask for a couple of days to research the different hormonal treatments available. As I said earlier I didn’t realise with Zoladex when I was given it, I asked what it would do and all they told me was that it would put me into a temporary menopause and I had the injection there and then. It was afterwards when I came home that I actually realised that its used as a cancer treatment for chemotherapy and it wouldn’t stop my periods for at least a month, so I bled for that whole first month when I was expecting some sort of miracle cure. So fully research any treatments that they offer you.
A hysterectomy isn’t a cure. There is no cure for this disease. It goes into a sort of remission state, but if you have the wrong hormone treatment it can just flare up again and it can start to feed itself. It isn’t cancer, but it acts like a cancer. It’s not a cancer because it doesn’t mutate, but it does grow and feed itself and reproduce itself like a cancer would. So that’s why it’s always overlooked because people say things like, “Oh it could be worse; it could be cancer!” And it’s like… I’m still in pain? That doesn’t make me feel any better. You can’t take away the fact that I’m still in absolute agony. Endometriosis can increase the risk of ovarian cancer in small cases, but when women are diagnosed with it and they’ll Google it they will see that in big capital letters flashing at them! It’s very, very rare that it happens.
Google or search on Facebook for endometriosis groups. For the first ten years or so I was diagnosed I felt like no one understood. No one understood me when I said “I can’t come out tonight, I’ve got a date with my hot water bottle, or with the toilet,” whereas I’ve found these support groups online. Yes a few have got divas who think the whole world revolves around them, but you’re going to find that anyway in any community. It happens in the autism community with Morgan, it happens anywhere. Just find a group you’re comfortable with, get to know the people in the group, and ask questions because these women have been through it. They know more than the gynaecologists most of the time as well. I’ve still got friends with gynaecologists saying that they’re cured when they’ve got pregnant, and it breaks my heart because I know its not true, but they’re not going to listen until they experience it. The people that we trust are lying to us because they don’t know enough about it. So, more education for gynaecologists!
Words and photographs by Roseanna Hanson