'Just' period pain?

[onceandfuture00]

I have a gynae appointment coming up in a couple of weeks and want to go in as prepared as possible so am looking for some advice/experiences…

I’ve always suffered from terrible period pain (vomiting, fainting from pain etc.) which would come on very fast the day my period started and last a couple of days. I took the pill for many years and during this time it was still extremely painful but more under control. Since having my daughter 4 years ago the pain has got much worse…it now starts roughly three days after ovulation and lasts for two weeks straight, until about the third day of my period. It’s affecting my whole life – it’s completely debilitating...moving around, driving, sleeping, everything is affected for two weeks. Painkillers don’t even touch the sides of it (also I worry that it can’t be healthy to take painkillers every day for half the month so I try to limit my use as far as possible.) I’m not on birth control as I’d really love to have another child (but know this is probably unlikely now as I just turned 39.) Sex is also painful during the second half of my cycle.

Obviously I’ve seen several different gynaecologists over the past 4 years but each one has told me that there is nothing wrong with me…I’ve never been offered a laparoscopy to diagnose endometriosis as I’ve simply been told I don’t have it. The only solution that has been suggested is to go back on the pill, which would obviously mean abandoning any chance (however small!) of falling pregnant. Other than that I’ve basically been told there is nothing that can be done.

So I guess my question is this, could what I go through each month really ‘just’ be period pain? I’ve never come across anyone else who gets such severe cramping for two weeks at a time without having fibroids/endo or some other factor at play, yet that’s what the doctors have all said up until now. Does anyone else suffer from such continuous cramping without there being anything else causing it?

Why did these people tell you that there is nothing wrong with you given all these symptoms which btw are ALL characteristic of endometriosis being present?. How did they explain away all of this?. What did they tell you and without doing a lap as well?. It sounds like you have been continuously fobbed off by people who should know far better.

Symptoms like this are not normal. BTW I had very very similar to you in terms of symptoms and I was eventually diagnosed with endometriosis as well.

I would keep a daily pain and symptom diary if you do not already do this and insist on answers. You will certainly need to be persistent in order to get answers.

Have a look at this website too:-
[[https://www.endometriosis-uk.org/]]

This will work:-

www.endometriosis-uk.org/

Thanks so much for your reply Attila, I'll definitely look at that link when I have moment.

I know I should have been more insistent in the past but I'm embarrassed to say I'd never heard of endometriosis until a couple of years ago when I read an article about it and it rang so many bells. I immediately made a gynaecologist appointment but he said a) that the pain is normal and actually a 'good sign' my reproductive system is working and b) even if it was endo there's nothing that can be done about it anyway.

I tried a different dr about a year and a half ago and he told me that it wasn't endo because if it was, it would show up on an ultrasound and there are no signs there. He also said I wouldn't have been able to conceive if I had it. His recommendation was more iboprofen...

Whenever I've mentioned it there's been rather a defensive "are you a doctor, do you know more than me?" attitude and I've found it hard to push for a laparoscopy when faced with this.

I'm just going to have to get pushier aren't I...

I agree with Attila, it sounds very much like endo to me. Any gynaecologist who tells you that it can be excluded on ultrasound clearly isn't well trained in endo so I'd avoid them anyway. I'd go along with a symptom diary and be quite upfront about it - tell them your symptoms, explain you like a diagnostic laparoscopy and see what they say. If they do diagnose endo then you'll have to do a shed load more research about treatment options and advocate hard for yourself. After many years of being told it was just period pain and being fobbed off with hormonal treatment, I eventually got diagnosed with endo, had it ablated which made my symptoms worse, finally saw an endo specialist who excised my then stage 4 disease and almost a decade later I'm still endo free.

Are you in the UK?. Your treatment to date has been absolutely appalling and you have suffered more pain as a result. I have had ignorant comments said to me by GPs about endo but your experience with these medical people takes the cake.

So yes you are going to have to become a lot more pushy in demanding proper answers. You have been fobbed off and ignored to date by so called trained professionals. It is imperative that you see a gynae who has a specialist interest in endometriosis; there are in the UK such centres of excellence.

BTW I have personally had more internal ultrasounds than I care to mention and NONE, repeat NONE of these detected the extensive endometriosis deposits throughout my uterine cavity.

What appalling care you’ve had!

Read up on the information from the endouk website posted earlier and maybe even print it off for the next gyne you see! They have a helpline too if you wanted to speak to someone.

Can you take a friend or family member to your next appointment who will help you fight your corner?

Thanks so much for your replies everyone, I really appreciate it...I've been going out of my mind trying to cope with this each month and thinking it's supposed to be normal! You've definitely given me the confidence to know that something really isn't right. I'm just so sorry to hear you've all suffered the same. It sounds like you've all been through so much just to get a diagnosis and then to find suitable treatment, thanks so much for sharing it with me.

You've given me some really helpful ideas for the appointment - I've already got a symptoms diary going back years so will take that. I'm in Spain but have found a Spanish endometriosis association and will definitely print off the diagnosis page as back-up. I don't know if this gynae specialises in endo as it's just a referral from my local gp - I'll try them first but if not I'll track down a private one who does.

I'm tempted to take my OH with me to the appointment as support but it could go either way because he's too friendly and chatty! Sometimes he gets a bit distracted and ends up talking about the wrong thing. Perhaps I can prep him first