Guest post: More than 'just period pain' - the agony of endometriosis
Rachel Buchanan suffered the misery of endometriosis for years before getting a diagnosis. She writes here about the so-called 'women's disease'.
The Little Pip
Posted on: Wed 30-Sep-15 16:40:15
(27 comments )
Crippling pain which often made me pass out or vomit became a regular part of life when I was about 13. But it was period pain, apparently, and just something I should learn to live with.
The first time I sought help was when, at about that age, I woke up with abdominal pain so bad that my mother rang the doctor. They suspected appendicitis, so my mother drove to the surgery straight away, which sticks in my mind as unusual, as we would usually walk. Vomiting from the pain in the surgery, I was given medication to stop me from being sick. It wasn't appendicitis. It was period pain. I was given painkillers and sent away. And felt embarrassed. Who vomits with period pain?
It took me years to learn that I have endometriosis. And much like people don't talk enough about mental health, or miscarriage - endometriosis isn't spoken about enough either. Yet it is a condition which affects one in 10 women, and a condition it is time we talked about.
On that day when I first sought help for my symptoms, the opinion seemed to be that all girls had periods, which were painful, so you just got on with it. I took painkillers, didn't go to school on the worst day and, living near the school, could run home at lunchtime to deal with the upset tummy I had every month. This just became part of life.
When I moved away from home and went to university, coping became harder. By my second year, I was regularly passing out with pain in the bathroom of my shared house. I met my boyfriend, now husband, who for a 19-year-old was surprisingly understanding when sometimes we had to stop in the middle of having sex, me doubled over in pain and trying to assuage his confusion that it wasn't anything he'd done.
Month in, month out, I'd have to have days off work, or work from home, or seek assistance in public places. I spent hours in the toilets of shops, or cafes, waiting for the pain to pass so I could carry on. This became part of life.
Although I did go to the GP, the overriding message was that periods were painful for everyone. Take painkillers. Get over it.
It was about 10 years after my first appendicitis scare that I had another. I was living in London by now and in a shared flat with that same understanding boyfriend. I called him from the bathroom floor whilst he was at a party and he took me to A&E. Whilst they couldn't do anything for me aside from more anti-vomiting tablets, that doctor was the first to make any kind of connection with the crippling pain always occurring mid-cycle. He suggested for the first time that there could be an explanation other than 'period pain'.
Finally, in 2009, 14 years after my symptoms appeared, I had a diagnostic laparoscopy. Finally, it gave me a label for the problem: endometriosis.
The pain didn't stop though; month in, month out, I'd have to have days off work, or work from home, or go and seek assistance in public places. Transport for London staff are particularly understanding when you need somewhere to lie down. I spent hours in the toilets of shops, or cafés, waiting for the pain to pass so I could carry on, spending a small fortune on sanitary items, ibuprofen and those disposable heat patches which are so much more discrete than a hot water bottle. Although I had one of those too, in my desk.
I was lucky - I had an extremely understanding secretary who knew that drinking hot water helped, that the pain would pass, and that if she could just keep staff and clients away from me for an hour, all would be okay again. Thankfully there was also a loo two doors away from my office.
Despite my diagnosis, the follow-up support I received was almost non-existent. I was told to come back if the pain 'got worse' or if I got pain or bleeding after sex. So, I duly reported the incidents and often got sent back for a scan to look at my ovarian cysts, but, so far, none have been large enough to require treatment.
I had a baby four years after the laparoscopy. It only took just over a year to conceive - we were lucky. I know many people with endometriosis who took far longer, had IVF, or weren't able to conceive at all. Those nine pregnant months were a welcome respite. My periods returned after three months though, despite breastfeeding, and gradually the pain started to come back, but perhaps not quite as bad as before. So far.
And so this is what it is like to live with this so-called 'women's disease'. The label, used because it affects women, whilst being strictly accurate, is misleading. My husband's life is also affected by my endometriosis. For many men - they are also dealing with potential consequences of infertility or at least difficulties with conceiving.
Men are often embarrassed and or dismissive of the gamut of 'women's issues', in part because they don't understand, want to pry or, in fairness to them, treat women differently. But if we can talk about endometriosis more, if we can make men and women more aware of what it is and what it does to its sufferers, I think we could go a long way to helping reduce the stigma and embarrassment that surrounds it.
By Rachel Buchanan
I've got it too. It's horrendous. Just a friendly post by way of recognition & solidarity
Another nod of solidarity here as well. I feel lucky that mine isn't as bad as you have described but it can be horrendous and I really believe more awareness would help so many of us sufferers.
Thank you for writing this. I definitely think there needs to be more awareness of endometriosis and similar conditions. I have a large fibroid so many of the symptoms are similar and I too have met a huge barrier when it comes to the healthcare system. I hope things improve for you soon
After years of problems with my endo my consultant suggested a cervical ablasion. Best thing EVER!!!! No periods, no pain. It's like a different life.
I had my gallbladder and appendix removed before anyone figured out my pain requiring frequent hospital stays and morphine was actually endometriosis. Both were healthy organs I was told (after they'd removed them!!!)
I have a plethora of gynae problems - endo is the worst of all of them.
I too have stage IV endo and have recently had an open myomectomy for fibroids and ovarian cystectomy and excision of my endo which was pretty much everywhere. Awful.... you have my sympathy. More needs to be done for recognition of this debilitating condition
When I was 15 I was kicked in the shins, gently I hasted to add, by my 'GP' for exaggerating my period pains.
I was told I was being melodramatic. "Other women 'just' got on with it", he told me.
When I was 35, I had an operation to remove an ovarian cyst. They photographed my internals whilst they were in there.
When I came round, I was told 'it's a wonder you've coped with your period pain with the amount of endometriosis you have'.
Being understood by a surgeon was a marvel. I couldn't get a GP to fathom at all.
20 years of total agony. 2 hours of surgery got me some compassion.
I've posted on the other thread too. Also 14 years of not only no diagnosis but being fobbed off as the OP was as being 'a wimp' unable to cope with pain that all women suffer. I also lost 3 babies prior to diagnosis and don't think I'll ever forgive any of the GP's who dismissed me for that. I was diagnosed and treated overseas. When I told them I had repeatedly been to drs with my symptoms they were disgusted. All they'd ever heard about the NHS was how wonderful it was and that every country wishes they had it. Rot!
Already mentioned on other thread but to give any who don't know an idea (thinking of any mothers of daughters who might be reading this hoping they don't dismiss daughters symptoms) I've had a 27 hour labour and a twisted ovary that hurt LESS than my period pains. I was dreading labour assuming it would be worse. The length was an issue but pain wise I told my then husband I'd honestly had many periods that were far worse.
I'd also agree with the feminist aspects - drs need to bloody well stop being so dismissive of women as patients/advocates for other patients.
Women are actually usually far more aware of what is normal for their body or who they're representing's body! BUT we're also still learning its OK to 'make a fuss' if we come to see you more than once about the same issue it's because we KNOW something isn't right.
Thank you for posting your story. So many bells rang when I was reading it and I'm planning a visit to my gp imminently. From the very start my periods were excruciating. I would faint, vomit, scream, moan like I was giving birth etc etc and was always told by my gp that this was normal and would settle down. The only slight relief would be extra strong painkillers, a hot water bottle on my tummy and my back against a scalding hot radiator. I spent days off school or in the sickness bay. I always felt like a wimp for not coping better. And the upset tummy which made life in public places panic inducing...
The gp was right, it did improve slightly after I had my daughter (wasn't trying for a baby as was told babies were unlikely as I have probable PCOS... have never used contraception and only conceived once in 25 years...) Dd is now 12 and the pain each month is ramping up, which I'd explained in my head as peri-menopause. Hmm more likely endometriosis I'm thinking!
Thank you so much for raising awareness and making me feel less odd x
I also have stage 4 endo. I am very lucky that I have no pain. Unfortunately I have a large endometrioma which is stuck within lots of adhesions and has taken my ovary with it and my tubes are full of blood. The op to remove is 5 hours long and involves 3 surgeons. I am putting it off for now as it scares the crap out of me. Just have to pray the cyst doesn't rupture. Apparently these type of cysts are less likely to burst as they have a thick skin but I feel a bit like a ticking time bomb at times. God knows how long I have had the condition. I have had two kids with no issues. It was only discovered by accident during an ultrasound for something else!
It is outrageous so many of us seek medical help for so long before diagnosis. I saw doctors for 13 years before I got my diagnosis.
I'm glad you're job allows you to take a break if necessary and go to the toilet too. Teaching totally didn't work with my symptoms and I ended up leaving full time work after my second surgery.
I agree labour has nothing on my period pain! I've given birth twice on a couple of panadol.
I hope my daughter and her generation would never have to go through this length of suffering to get treatment.
This makes me so upset and angry, that girls and women in such pain get so fobbed off and told just to cope with the 'period pain'. I had a lifetime of this and am so glad that I am now nearing the menopause.
I sincerely hope that GPs are becoming more sympathetic and clued up regarding women's pelvic pain than the hopeless and uncaring ones that dismissed me in my teens. It ruined my life for years.
We need a Mumsnet campaign for this, surely?
Yes this needs talking about. I didn't suffer as badly as you, but by the time I got a diagnosis my fertility was badly damaged.
I too suffered horrendously from the age of 13. Vomiting, diarrhoea, fainting, excruciating pain. I can remember the first time I felt the pain, it was like being kicked. The pill helped a lot though. Then I had years of infertility too. Things did get better after my DCs were born and I've had a Mirena for the last 12 years. I still get the odd twinge though.
Another nod of support from over here.
I really hate that my endo symptoms are bowel and bladder related. Public toilets in particular are pretty grim when you're sweating, shaking and crying out in pain. People do not look on that kindly...
So much familiarity here. I'm just getting over laparoscopy #4 (and hysteroscopy #2). Still waiting for my stitches to dissolve. After two weeks I was feeling utterly amazing, then my period hit and I feel like my insides are trying to crawl out of me again. I just hope this passes in the next day or two. Desperately trying to conceive again, I'm lucky I've got one amazing son (three pregnancies) and a super understanding husband who knows when to bring the chocolate/painkillers/hot water bottle. Aside from him, I feel so ridiculously lonely that nobody understands me properly. It's a very isolating condition and it makes me feel just a bit less so knowing that you ladies are feeling the same. Something needs to improve. I pray that I can get pregnant and desperately want a boy, because I dread having a daughter and having to watch her go through the same as I have. I was lucky to be diagnosed quickly but the only respite I've had in the last seven years is when I was pregnant. Not really a long term pain management plan!!!!
Another sufferer here. I've read that 1 in 10 women have this and we all will have been dismissed and belittled by GPs. It's time someone listened.
I remember going to work and nearly fainting in the kitchen and having to shout to someone for help, it was the most scariest time of my life knowing something was so wrong with me and how something that bad/painful could make you feel so vunerable.
I always remember the look in my GP's face when she said describe the pain ... I said the 3 days of child labour without drugs was a doddle compared to this ... it's the worst pain Ive ever experienced...she looked at me and said endometriosis. Great that she understood BUT then it all went wrong because she sent me to a general gynocologist who didnt specialise in endo, didnt really know or understand in full. Got booked in for a lap within 10 days and she said she had a look aroudn and washed out the area. Obviously to me I just thought great this is what yo do to treat it. 6 weeks later after 2 weeks off work due to a wound infection the pain returned I was absolutely gutted. I got angry that I had gone through all of this and still the pain returned, this is when I did my own research, found a surgeon/consultant in the are who specialised in endo and rang my GP and demanded I be referred to him...she booked me an apt straight away (yes they can do this from the surgery call a select and book appt).
He was amazing spent the time to talk to me and explained absolutely everything - I wasnt going mad, I didnt have period pains etc... I have regular scans to monitor areas and a cyst I have on an ovary, we have explored managing the pain with different methods...and sounds crazy but I do think that the relief of being under someone who totally knows about this condition has released a little bit of the pain or made it more easy to manage.
GP's need to know how to diagnose BUT also how to follow through and send patients to specialists...the general gynocologist I initially saw was so unaware of what to do
One of the reasons I started working from home was so that I could lie down without anyone knowing....several times I was discovered collapsed on the meeting room sofa!
There seems to be no help. I only got diagnosed after an ovarian cyst burst. After that there was no follow up until another emergency admission - 2 large cysts.
The hysterectomy pretty much solved it for me but I had years of pain and no help from doctors.
I've had this since I was 14 I'm now 25 and still suffer from the thing! It's awful
I have to get a scan next week as pains have started and now looks like cysts x
Another one here.
Thanks for sharing and raising awareness x
Thank you all for sharing your stories and support.
My mum is an Endo sufferer and even post hysterectomy battles her condition on a near daily basis. She was fortunate to be diagnosed in the 90's, but had really unsuccessful laser surgery (the best option at the time, but fairly brutal). At 52, she's semi-retired and clinically depressed.
I'll never forget seeing my mum weep with relief after I had confirmation that I did not have Endometriosis myself. The guilt she felt at possibly 'passing on' her illness was the worst part of her Endo experience.