I feel so let down and it's hard to listen to people sing the NHS' praises when I keep having awful experiences with them. I'm 22 and I live alone and had such extreme pain in my legs and back for three days that I was throwing up and shaking from it.
My GP sent me to A&E and all they could find was an elevated CRP in my bloods. I told them I have endometriosis and it feels like the pain I had before my laparoscopy 3 years ago and the doctor bluntly told me "endometriosis does not cause pain in your legs and back, only abdomen"
I've been bleeding non stop for 7 weeks and no one will help me. I sat in the A&E waiting room on my own, crying for 5 hours for a doctor to tell me I was basically lying and tell me to go home and take codeine, which I've already been taking and it isn't helping.
No one will help me. I was shaking in pain and they made me go home. Why has to happen to me for the NHS to take me seriously?
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I'm so sorry you're having to go through this. As Fabbird says lots of doctors don't understand endo or adenomyosis. Has no-one given you anything for the bleeding? Don't get me wrong the pain is not normal either, but you should not be bleeding for 7 weeks.
I agree with Fabbird - try a different GP. You need a referral to a specialist in endometriosis.
I'm so sorry you went through this, I can sympathise entirely.
My fiancé and I have spent many nights in A&E only to be told that I'm basically over reacting and that I shouldn't have gone there in the first place.
I am so sick of people singing praises about the NHS and I haven't recently lost friendships over it. In 7 years, the NHS has just fobbed me off and passed me around from doctor to doctor and still I have no answers!!
Endometriosis can cause pain in your legs. I don't think directly but my GP said it's something to do with the nerves! I get really terrible cramping almost numb feeling in my thighs when my pain is really bad.
I really hope you get referred to an endometriosis specialist, that's what I'm going to do on Monday!
Good luck, I'm always here if you need a ranting partner about the NHS! Xx
Magnesium, I take together Brand a d be bought from Holland & barrat. This with sooth mustles and help with cramp and mood. Serraoeotase is amazinv and i ca t say how helpful it was. Caused my cyst to come out on its own. The thing to remember is the NHS is a tool to get what you need, esp with an illness like endo their knowledge is super limited.
I gave up dairy, gluten and soy ( the e do diet) and now have a reaction when i eat them, their tests say im fine.
I'm not a doctor but it sounds to me like you have a polyp or a cyst in your uterus caused by excess estrogen. These cause mid cycle bleeding. Ask for a sonogram o. You r uterus.
I have had horrendous hospital experiences but I have also had really positive, helpful experiences. There are good, knowledgeable doctors out there. Sadly the problem is finding one. I had similar terrible experiences in A&E, which included being offered paracetamol tablets by a junior doctor who openly admitted that he knew nothing about endometriosis and didn't know what decapeptyl was. I'd already taken codeine and an assortment of other painkillers that weren't working and was throwing up and they gave me 2 paracetamol and left me to sit on a chair in the waiting room. There was the GP who told me I didn't have the symptoms of endo, the anaethetist who forgot to fit me with a PCA after my hysterectomy and bowel excision, the nurse who wouldn't listen when I had a vaginal pack in post surgery and couldn't pee because they forgot to put in a catheter (by the time the consultant came round the next morning I was in agony and they drained out nearly a litre of urine when he told them to put a catheter in ASAP).
That said, I have also had really great treatment and met some fantastic and caring staff. I've had brilliant care from paramedics, from the specialist surgeon at my bsge centre and from the nurse at my GP's surgery who has been handling my care for the past 2 years but I agree that it takes far too long and is far too difficult for us to access treatment. It's not like this is a rare disease that a GP will see once in a lifetime, or A&E staff are seeing this once in a blue moon. Too many medical staff simply will not take our pain seriously which I personally think is part of a much bigger problem with the way society sees women's pain. There is a belief that a female body is just a painful place to be and that we should almost be grateful for it, with nonsense about drug free childbirth being empowering (I've tried it, it wasn't empowering, it was sh*t) and losing several days a month to period pain being normal. The only reason the medical profession is getting away with this IMO is because endometriosis doesn't kill us.
BTW endo does cause pain in your legs and back. I have first hand experience of that.
hi. I'm so sorry you have had such poor care, we go go to our gp and hospitals to get help not to be made to feel bad about our issues.
firstly you need to tackle the pain. What meds are you on? I've had crippling pain in my back, hips and legs caused by my endometriosis so whoever told you it wouldn't be that needs to do some research the bsge specialist in under described it as a common symptom as endometriosis can be on nerves.
go back to your gp and ask for a referral to the pain team, they were brilliant at making sure I was on the right medication to at least get out of bed in morning which was a big improvement! I've also found duet has helped as I've got it on / in my bowel and some foods just kick it all off.
for the hospital I would go to the pals to complain and as the doctors obviously need training in endometriosis and like has already been said it's not some random rare disease it's very common it's just not talked about - I'm completely honest and upfront with anyone that asks how I am much to my mother-in-laws horror but if people don't know what it is they won't understand!
lastly don't be put off going again, your pain is real and sometimes help is needed and if they don't take you seriously say you will just go back round to a&e and start again till someone will help
I hope you can get on top of the pain as it is exhausting.
Honey, we understand exactly how you feel. Many of us have gone through this process and experienced the medical incompetence first hand. Endometriosis isn't well-understood by doctors and this is why it takes an average eight years for women to be correctly diagnosed.
Endometriosis does cause pain in the back and legs. The gynae. was talking out of his/her backside.
This is what you can do:
1. Switch to a G.P (perhaps female). Explain how much this illness is affecting your quality of life and ask for a referral to an endometriosis specialist at the hospital.
2. The waiting list can be a few months. To expedite your appointment, ask your G.P. to write a letter to the consultant to fast-track the appointment date.
3. Switch to the endometriosis diet to reduce the pain.
4. Ask your G.P to prescribe codeine to help you manage the pain in the lead up to the appointment.
5. Have several hot water bottles for your tummy, back and legs.
6. When you're better, write a letter of complaint about the gynae. who gave you erroneous information. I reported an incompetent gynae.'s comments to the consultant. They need to be exposed.
I went through this process when I lived alone, too. My heart goes out to you because I know how sad and difficult it is. I cried so much! You will be happy and healed and you'll get your life back. You will need courage and persistence to get through this initial stage. Please remember we are here for you and will provide support when you need it. x
I would say actually to ask for a variety of meds other than codeine. Once my endo pain became very severe codeine was useless and it made me throw up (and it took forever for someone to suggest antisickness to take with it). My stash included diclofenac, diclofenac suppositories, mefenamic acid, codeine, tramadol and then ondansetron for the sickness. I've also used oramorph and IV morphine. There should also be some sort of hormone treatment being used to try and stop periods.
Hi everyone, thank you for all of your responses. I'm on the mini pill right now but I've just bled constantly on it. I had migraines on the combined pill so my GP took me off that.
I have been referred to a gynae and the GP has suggested I get the coil and my cells checked to rule out anything sinister with all the bleeding. But that was 3 weeks ago and I haven't had a letter or anything and I'm aware it may take a while.
But in the mean time I'm bleeding everyday and I'm in pain everyday. I've had endo for 9 years now. I feel like I've exhausted all options and I just need a break from it.
Are you taking cerazette? I took that for 8 months and bled all the time. It doesn't suit everyone and if it isn't improving your quality of life then there's not much point in taking it. Can you go back to see a different GP and go through your options with them - and also chase up what is happening with the coil (although TBH a mirena contains the same hormones as the POP and I personally bled all the time with one of those too). A GP can put the coil in for you, so you shouldn't have to wait months for one. What about depo? There are other options.
It's not till you've suffered that people really appreciate what living with this is all about. At the beginning of my endo journey I went to my GP with a thunder like pain in my leg she told me I need to go for physio on my back, after me pushing pushing & pushing I've now had a correct diagnosis which has proved my point all along!!!! I've had a bad back before & knew it wasn't muscular! Dr's can't always be right & sometimes it takes several appointments & almost a real sense of badgering them before blood test/ laproscaopy scans & ultrasounds then speak the truth & then people realise that maybe this thing is real!!!!! Endo gives pain in several places maybe some of the dr's need to go on Amazon & purchase some of the books that are on sale where they can read about endo & them educate themselves I found my female GP a little more understanding one male dr told me I had a water infection!!!! Yes The human body is complicated but with good specialists & people with a greater understanding of the condition it go's a long way in trying to help us!!
I'm so sorry you're experiencing this. As others have stated I've had horrendous experiences at a&e. The last time was being handed paracetamol for 6 hrs before finally a consultant came round and gave me a morphine drip. I'd already taken ibuprofen, codeine and tramadol at home. Paracetamol is as useful as chewing on a sweet in comparison. Due to the wait my painkillers had worn off so I was vomiting, near blacking out and in screaming level of pain etc. This was some year ago. I now live alone, parents died and I'm single so I feel sheer dread when the pain gets to a level where I know I should be at a&e. You did well to go and I'm so sorry after making it there you were not helped.
Re Endo can't cause back, hip or leg pain - nonsense. I get sciatica when Endo flares, my back locks so I can't bend and I very regularly have pain in my right hip (I had what they thought was an endometrioma cyst rupture at my right ovary 6 months ago and my hip has been playing up since). I also get heavy pressure pain and like electrical zig zagging going right down my thighs.
I've been on cerazette for 3 months. I've now had a month without absolutely horrific pain but prior to that a proper period and its associated pain was peaking every 2 weeks. I think I've had 5 non bleed days in over 2 months. It's wrecked havoc with my hormones and only had about 5 days where I've been pain free. Admittedly I've now had a month with no horrific pain (but that would be the case normally as my worst flares are once a month during period) but every single day I've had mild to moderate constantly nagging pain which triggers my back. It could possibly be the reason for your bleeding if you're on the mini pill. You def need to see a different GP. If need be change repeatedly until you find one that has knowledge about Endo. It's utterly exhausting I know - we should be able to go to the dr or a&e and be given help! I'm sure you'll see from other posts so many Endo sufferers have to fight for good treatment. Print out as much info as you can find and take it with you. They need to refer you to a BSGE Endo centre, see a specialist and pain management. Google 'Endometriosis NHS pathway' and print that. Unfortunately I did this 6 months ago and I only got a scan. Didn't even see a consultant. It set me back psychologically so much but I'm returning to my gp this week to demand a referral elsewhere and to also discuss cerazette and whether I should persevere another month. I have had other Endo sufferers tell me that once they were switched to double the dose the bleeding stopped along with the associated pain or they had success once they switched to Noriday so all is not lost!
Do you have a friend who could accompany you to the GP and help fight your corner? I'm attempting to go alone this week but last week I planned to go and I had an almighty anxiety attack (I also have unrelated ptsd) and couldn't set off. If this week isn't a success I'm going to have to ask someone to accompany me.
Do post regularly on here. I know you're alone at home but you are not alone dealing with this. You will receive so much support from others on the forum. If you haven't done already, go onto Endo UK's site and search local support groups. There are many Facebook groups and hopefully one in your area. They also have meet ups. Although I've not been able to attend one yet it really has meant the world to me to be able to chat to others going through similar in my area.
Thank you lovely, I'm sorry you've dealt with the struggle to get help too. I'm on Noriday right now and that's what is causing the non stop bleeding I'm taking Norethisterone too but there's risk of blood clots which is why I panicked so much when I had such strong pain in my legs. When I told the doctor in A&E I'd bled everyday for 7 weeks she just started but at me with a blank expression and changed the subject.
I'm moving soon to live with my boyfriend so things should get better for me but I just don't want my endo to rule my life. There's a women's hospital where I'm moving so I'm hoping I'll get better treatment there. I'm definitely going to have to fight for it though, I can tell.
I've actually found out there is an Endometriosis clinic where I am moving to in 2 months in Liverpool. I'm almost in tears I didn't even realise they existed! I just need to hold on for 2 months and I may get some real help!
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I'm taking Norethisterone too but there's risk of blood clots which is why I panicked so much when I had such strong pain in my legs. When I told the doctor in A&E I'd bled everyday for 7 weeks she just started but at me with a blank expression and changed the subject. 
Feeling like a failure... normal? 
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