Take me seriously

[Oxfordendo2016]

Does anyone else have an issue being taken seriously by the NHS? I have been suffering for 4 years now and since I came off the pill I have had the worst pelvic pains.

[jvg69]

10 years of being fobbed off, passed around from pillar to post, many people seem to have the same story *sigh good luck and don't let it go on like I did x

[Poorna66]

Unfortunately, its way too common for women suffering from endo not to be taken seriously forget friends and colleagues, even immediate family members and doctors dont always take me seriously when i tell them how much pain i have because outwardly i look ok. I hope you find the care and attentiom you deserve, good luck

[JeanOsborne]

It took me nearly 30 years before someone took me seriously. So you're not alone. Keep fighting and don't ever give up.

[Marcia71]

Feels all too familiar. I had to find my local BSGE endo clinic and find out how GP referred me to them and then just tell them what to do. Only way I got any recognition from NHS

Keep trying and good luck

[GrittyReads]

Yes, go to your GP and demand to be referred to a BSGE Clinic. They are 'specialist Centres for the diagnosis and Treatment of Endo' GPs are supposed to refer Endo sufferers there. Search on here for links, and on how to find your nearest centre, and what to do to get your GP to refer you. Or phone / email the 'Endo UK' people - link at the top of this page.

I know the ignorance of some GPs and many hospital staff can be a shock, but many are also so brilliant - and the NHS is severely underfunded, under-resourced and understaffed, and overworked. It's also amazing how many senior gynaecologists also just don't know that much about Endo - you do need the specially trained ones in these Centres.

Help is out there, but you may have to do much of the work yourself. NB Take someone with you when you go back to see the GP, get this person up-to-speed on Endo and the BSGE centres, too, so they can come in if you forget any info, or get overwhelmed. Also, write it all down. Know what your rights are and stick to them.

Good luck, meanwhile, and look after yourself: do things you love, enjoy and that make you happy - I know it's easier said than done when the pain is bad, but coddle and treat yourself.

xx

[Oxfordendo2016 in reply to GrittyReads]

Some great tips here thank you.

[ccorti]

Sorry to hear you're being fobbed off, have you had a diagnostic lap yet?

[Oxfordendo2016 in reply to ccorti]

I had one 4 years ago and have another one next week to see how things have changed. Main issue is I was in pill for so many years it must have masked my symptoms. Now I'm off its terrible!

[ccorti in reply to Oxfordendo2016]

Yes the pill does tend to do that. In my experience, the findings from the lap really changes the way doctors see and treat you. Wait until you get the results from the next lap, and if you get fobbed off again, I'd speak to PALS. Make sure you get referred to a BSGE centre as well, as they are much better than general gynae

[ccorti in reply to Oxfordendo2016]

P.S Good luck for your lap next week x

[Hidden]

I totally understand I got my first period when I was 8 and my doctor told me not to worry, it skipped me for 2 years of occasional spotting as well as what my doctor thought were reaccurent cases of the stomach flu.

Later on when I was in grade 7 (12) I started to have symptoms of an estrogen imbalance my doctor told me not to worry. Then the pain came, nausea, vommiting, diahria, dizziness. Nothing got better I was put on acid reflex medication, IBS pills, too to eliminate foods from my diet, but nothing worked. By grade 8 people were bullying me because I was never at school and I was always sick plus I could never say what I had because I had no idea at all. My doctor concluding I had an electrolyte deficiency, and told me to add more salt to my diet then she told me I had to live with pain, and I was told doctor after doctor that it was all in my head. I was then dignosed with scoliosis also and I convinced myself the pain was from that but only the back pain left.

Fast forward to last summer, I got really heavy bleeding very fast, my doctor put me on naproxen, that didn't work so I didn't come back till February when I threw up with svere pain, she put me on marvelon. It took care of the heavy bleeding as well as mood swings but my pain got worse and worse and I stopped taking it after 6 days because of a panic attack. I was refered to a Gynacologist and she looked at my paper and said endo saying my history was that way. I'm now on my 4th birth control which is now progesterone only. My gyn isn't very understanding pain wise, instead of diagnosing she's focussed on giving me a higher dose of painkillers and more birth control as well as saying that I have a low pain tolerance and that's why it hurts. However the neck pain I experience from scoliosis is still there (I get headaces when it tenses) but it doesn't feel as severe as it used to and I know the pain is getting worse and its travelling to other areas. In the end, the reason we don't get the care we need is because women are expected to endure pain and that society shuns women's Heath issues a lot.

[Oxfordendo2016 in reply to Hidden]

God it sounds like you have had it really hard. I am so sorry to hear that. Have you ever tried to sort with diet or Chinese medicine. I am told acupuncture can be great. Keep your head up

[Hidden in reply to Oxfordendo2016]

I already tried eliminating everything for diet and I had no improvement of symptoms but I'm waiting for a referral to physiotherapy for my gyn.

[Annmurry in reply to Hidden]

I started my period at 9 years old, heavy painful periods, I've almost given up with doctors, I'm literally at the end of my tether with them. I had pains for years which i was told was anxiety. Apparently mental health does a lot to a woman's body. Does it...

[Hidden in reply to Annmurry]

Not at all, although I was emotionally, physically, and sexually abused from the age of 7 to 16, I can vouch for the fact that you can not get sick from mental illness, although depression can cause you to have periods that are scant it will not cause pain but can cause a hormonal imbalance. A hormonal imbalance can cause endo because it is associated with high estrogen.

Mental illness can cause loss of appetite, loss of sleep, muscle aches and pains, headaces, light menstrual periods that are irregular and so much more. Trauma victims will experience pain sometimes when they have an anxiety attack or think of the abuse. However mental illness can't cause diahria, painful menstraution, vommiting (unless if it's an eating disorder, such as belemia), chills, fainting spells, heavy menstrual periods, pelvic pain, urinary track infections, constipation.

What I'm trying to say is anxiety is not the cause of heavy painful periods, what could cause them is:

endometriosis, pelvic inflammatory disease, poly cystic ovaries, hypo or hyper thyroidism, diabetes, and so much more.

The problem with women's health issues is that from the day we are born we are told to endure pain, to keep it secret as well as shamed for our sexual wellbeing. In our society menstruation is shameful, we are told not to talk about it with friends, and most women are uncomfortable talking about it so a doctor's opinion is most commonly the only one we'll hear, and we'll believe them when they say there's nothing wrong with us because their a dr. But wrong you know your body, if your in pain your in pain. Hypocondria, the illness associated with anxiety of being ill, makes you think your going to die from the common cold but doesn't make you feel pain.

However the medical system is also closely tied to society, an example of this is that women had to point on a carved doll where their body hurts because a doctor couldn't touch them, also the concept of physical virginity, it took us a few 100 years just to realize there is no such thing as a hymen.

Please find another doctor, tell them about endometriosis, sadly with this disease you have to become pushy in order to get proper medical care, try to get a referral to a Gynacologist.

[Annmurry in reply to Hidden]

Thank you for that post. I turned to my new doctor that I was sick of being told it was all in the head, considering I have been well from depression/anxiety for almost two years now, I'm pretty confident this is not anxiety considering I have had anxiety for almost 15 years, its a shame that the doctors see it like that, they found a mass near my ovary, that it definitely not anxiety

I can fight back now...so don't worry this will be sorted.. good luck to all the other woman, its taken me a while and some others I expect... just need to stop this from happening!!

[Hidden in reply to Annmurry]

I know!! It takes women so long to be dignosed it's very sad plus we're isolated because we feel 'crazy' to say the least after telling the dr's over and over we're in pain.

[Annmurry]

would it make sense as so many woman are suffering and not getting the right care that we need to start a petition for this to change if you get over 100.000 signatures that they have to discuss it in parliament. We should not have to suffer, something needs to be done! Makes me so angry

[Oxfordendo2016]

I would sign it

[Annmurry in reply to Oxfordendo2016]

I think alot of people woman would and my husband would too, he hates seeing me in pain.