Endometriosis diagnosis

[SENDChaos]

Hi everyone.

Im nearly 41 and for the last probably, 2 years, my period pains had been unbearable. My periods are regular, no changes with slow, discharge, no spotting or bleeding in between, only change was I would also be in pain when in ovulation. I actually thought it might have been the start of pre-menopause so never got medical advice.

I was out this Sunday, first day of my period and out of nowhere I was in excruciating pain but on top of that I suddenly couldn’t feel my hands, they were seizing, the left side of my face was seizing, my sight went blurry and my legs gave way on me. A lady gave me strong painkillers and with the help of people with me, I managed to get back to my friends house as I was refusing an ambulance being called. 45 minutes later, it was like it had never happened and I was back to my normal self. I had my son, younger sister and friend with me who made me promise them I would see my GP the next day about it as they were all so scared.

the GP told me yesterday that the physical issues the day before were in fact my body reacting to the amount of pain I have been and was going through at the time and believes I actually have endometriosis.

I don’t know anyone who has this, my mum is just dismissing me when I’ve tried talking to her about it, saying majority of women have this or similar issues and I don’t want to go down a black whole on Google. I know I’m not gonna die but would really appreciate hearing from others with the condition.

I thought the next time I would be seeing my GP about my periods would be about menopause so it’s completely caught me off guard.

My DD had heavy and painful periods for years and didn't make much of a fuss, until one day I found her, fresh from the shower, in a towel, on the floor of the bathroom, head in the loo, vomiting and bleeding, both copiously. She'd already passed out on the floor from the pain, as I could tell from the blood on her face. We made her a private appointment for a laparoscopy/ablation the next month and they found endo, plus retrograde menstruation (i.e. bleeding upwards and even when not on her period). She's now on double dose contraceptive pill and is vastly better. Endo can be milder for some (I had it but didn't realise until removal of a cyst in my early 30s) and truly awful. The majority of women don't have it I don't think but it is genetic and I would strongly suspect that your mum does have it and never had treatment, hence the dismissive attitude. Go for treatment OP and if your mum disagrees, tough. x

Oh the pain is unbearable and has been for probably 2 years and I gave birth without any pain relief, walked myself to the delivery room at 8cms dilated but because it’s only 2/3 days a month, I’m not working atm and my child is out of school, so it wasn’t effecting those things, I would just put up with it and make sure I would be home in advance for those days.

oh I’m going to have the treatment regardless of what mum or anyone else says, especially now I 100% know the pain isn’t normal and I never needed to ‘just get on with it,’ kinda thing

I can recommend this site for reliable information and support. https://www.endometriosis-uk.org

It's great that your GP is taking your pain seriously - this is often a major hurdle to cross. Have you discussed next steps with your GP? You need to get a definitive diagnosis. The site I've linked explains diagnostic and treatment pathways, there's also a forum where you can read others' experiences.

He gave me middle strength pain relief to take home, said if I’m taking the max dose then to call and they will put the dose to the max to help me while I’m waiting for the hospital referral to have it confirmed.

I just felt so silly at my age to be seeing a GP about it of that makes sense

I wasn't diagnosed till my early 40s, by which time the pain had escalated to the point where I was passing out with it, and getting it throughout the month, not just during my periods. There is no shame in a later diagnosis - 'women's pain' is too often minimised, we're expected just to crack on with it, which we do until cracking on becomes cracking up!

I think because my periods are always on time, no change in my flow, not bleeding in between, I just got on with it, like you said. The only difference apart from the pain was when I’m ovulating. It’s like the days I’m ovulating I have what was normal period pains but when I’m actually on my period, the pain is worth than child birth!!

Because i suffer with mental health, contraception isn’t a route so I don’t know what happens when it’s this situation xx

Any pain that is cyclical in nature and or gets worse up to and including menses should be checked to see if endo is present. It’s usually however diagnosed through a keyhole surgery op called a laparoscopy.

I was diagnosed with endometriosis at 31 when I’d been suffering with it from onset of menses at 14. My mother had no idea what was wrong with me and do medical help at that time was not sought. I also had irregular periods and so did not have a period every month. I was also diagnosed with PCOS in my 39s; that was the cause of my irregular periods. The causes are not fully understood but it can go down the female line in some families . My mum had no such problems but her mother may have done, I do not know.

Painful periods are closely associated with endo and mild disease can cause great pain. It can also cause heavy bleeding to arise. Around 10 percent of women have endometriosis and it’s the second most common gynae issue seen in women after fibroids. Many GPs are simply not up to spend saying it’s uncommon etc and I’ve had to tell them about endometriosis!.

if you have the means to go private even if it’s only for an initial consultation do so. I suggest this as waiting lists for gynaecology in many areas of the U.K. are miles long. Do look at the website endometriosis U.K. as Mrs Harold Wilson recommended.

any other questions just ask .

The options depend on the severity of the endo and whether you have adhesions, but it can be managed surgically. I ultimately had to have a hysterectomy, but that's the treatment of last resort if more conservative surgery hasn't worked. You should know more when you've had a full investigation.

And I agree with Atilla to go private if it's an option.

I used to suffer when I was a teenager with my periods so went on the pill at 14 and never had deliberating pains/problems until 18 months, 2 years ago. I honestly thought it could be me heading into menopause.

The GP did originally say fibroids and has also done a referral for that but spoke to a colleague and believes it’s endometriosis as fibroids causes changes in periods

Bless your heart…I feel massively for you….out of all the pain I have ever had in my life ( and please believe me I know how pain feels) I have never ever experienced anything even approaching the pain of Endo…..I’m post menopausal now and just reading your post has brought back some horrendous memories….i described it like “ wolves biting my ovaries”…it was white pain!!! Acupuncture massively helped as did endo ablation….and of course big doses of cocodamol….good luck with your investigations and treatment….xx

i was not put on the pill but I wish I had been as it would have helped mask the symptoms. I grew to live with it. I can also relate to the pain and it was far worse to me than actual labour psin. Endo pain was severe and ongoing; it used to floor me.

I’ve never really let on to just how bad the pain would be, I’d make a joke out of it to my mum and say it felt like a goblin was trying to get out of me. It’s like pains that make me wanna push, but my body isn’t telling me to push if that makes any sense?!

I didn’t even have gas and air when I gave birth, I also had to be on my back during labour because I was bleeding and they didn’t know why but I would do that over and over again instead of having these pains

My cousin used to get me 1000mg ibuprofen from Italy that you’re only supposed to take 1 a day but I’d take 4 or even 6 just to get rid of the pain.

Give me child birth every time over this pain

Tens machine and painkillers did not touch the sides, I had to ride it out and wait for the pain to subside. It also affected all aspects of mu life. Having the endo surgically removed laparoscopically via diathermy helped re the pain and my periods settled right down.

I damaged my stomach by taking huge amounts of ibuprofen - and that was just to get the pain manageably dull. The pain was so bad that I really didn't care about the consequences of overdosing on painkillers because any consequence was better than the agony.