Hello, I’m very new to all of this and looking for some advice if possible.
I’m 28 years old and up until I came off the pill a few months ago I have never suffered with my periods. Last year I was told that I had cervical erosion and needed treatment for this, I had the cells frozen away and was advised to stop taking the pill as the oestrogen can contribute to cervical erosion. I came off the pill and this is where things started going wrong.
For the last 3 periods that I’ve had I have been in excruciating pain in my lower abdomen on the left side. The first time I had this pain I was so scared that I went to A&E and the doctors there thought I was in labour. After doing a generic X-ray I got sent on my way with cocodamol.
I am currently on my period now and have had the worst weekend. I have been in absolute agony. The only way to describe the pain is that it feels like contractions that last for up to 8 hours. During this time I can’t move and just sit in floods of tears. I rang 111 yesterday and got an out of hours GP appointment and got given some Naproxen. However, I was also sick around 5 times yesterday afternoon.
I’m off work today and have an appointment with my own GP at 2pm. I’m just wondering if anyone had any advice or support to get to the bottom of this please?
I’ve also had diarrhoea for around 6 years which has been investigated but they’re struggling to find answers. I’m wondering now whether that could be a symptom of endometriosis too?
Thank you
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EmmaG91
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Hi - I'd suggest you have a good read through the NICE guideline if you have time as it details the symptoms GPs should be looking for. You only need one to be suspected of having endo and you have already mentioned two. Please also note the requirement to only be seen by a gynaecologist with a special interest in endo as a minimum. Left sided pain with periods is a typical symptom of long standing endo that has progressed and often radiates to the lower back and down the leg. It is vital that your diagnostic journey is with the right people from the start with the appropriate training in treating endo and not a general gynaecologist.
NICE:
1.3.1 Suspect endometriosis in women (including young women aged 17 and under) presenting with 1 or more of the following symptoms or signs:
chronic pelvic pain
period-related pain (dysmenorrhoea) affecting daily activities and quality of life
deep pain during or after sexual intercourse
period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements
period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine
infertility in association with 1 or more of the above.
Thank you so much for your advice. I really appreciate it.
My doctors appointment was brought forward so I have already been. I explained all of my symptoms and have been booked back in for a pelvic exam and swabs. I was told to just go back on the pill and take pain relief but I explained that if it is endo it could spread and I need to know what it is.
I feel like I was treated as a hypochondriac to be honest but I know my own body and I will fight to see a specialist now. The pain is so intense when it comes and also feels like something is bulging out of my back and side. I did a urine sample that was very red but not sure if this is normal when on my period?
I feel like this is going to be a long journey which is scary because I would like to try for a baby in the latter part of this year.
blood in your urine is not normal at any time even when on your period, it can be a sign of endo in your bladder.
having said that you need to be sure it's definitely coming from your bladder, which is difficult when on your period! The best way I've found is shower, clean the area (wipes, or just water), either use a tampon / menstrual cup or tissue put just in the vagina (it'll only be for a few minutes), this should be enough to stop period blood mixing, then wee into a cup. If this is still very pink you need to mention that to your specialist.
Follow the information / advice Lindle has given, and let us all know how things are going x
It is really interesting that you have said that, my last period and pain was 3 weeks ago and they found blood in my urine then as well and told me it was normal. I have noticed tiny specks of blood in my wee when on my period and I believe it is coming from bladder. I shall raise this with a specialist as and when I get to see one.
It’s worrying how little GPs seem to know on this matter.
Generally blood in urine is quite a common symptom of endo but doesn't usually mean endo inside the bladder which is rare. As with blood with stools at period time it is usually caused by inflammation of the outside of the bladder/bowel from either endo on the surface or the general inflammatory peritoneal environment at that time due to the withdrawal of progesterone which is anti-inflammatory. With symptoms such as your though deep badder endo certainly can't be ruled out.
In terms of my bowel problems I have had a colonoscopy which found ileitis and ulcers in the large bowel. They don’t seem too concerned about this though and have explained it’s not enough to diagnose Crohns (which I am thankful for). Could any of this be caused by endometriosis?
My inflammatory markers are always up when I have blood tests too.
In terms of my GP appointment requesting a pelvic examination, I’m considering asking for this not to be done and for a referral to a specialist straight away. Surely the specialist will simply redo this exam. I am getting tired of been poked and prodded and nothing coming of it. Also, can they even see that much from a pelvic exam?
My period seems to have finished now but I’m experiencing pain after eating and red urine still.
I appreciate you replying btw as it’s helping me understand things a lot more.
Yes the clinical exam is critical and how severe endo is often first diagnosed which then fulfils referral criteria to be seen straight off in a tertiary endo centre. But this requires the skill and knowledge of a gynaecologist with endo experience to fully interpret findings.
Ah thank you. My pelvis exam is booked in with my GP who didn't seem to have a great understanding of endometriosis. Am I within my rights to ask to be referred to a gynaecologist who is an endo expert for them to do the exam? I feel they will want to do their own exam anyway. Thank you
'1.3.3 Offer an abdominal and pelvic examination to women with suspected
endometriosis to identify abdominal masses and pelvic signs, such as reduced
organ mobility and enlargement, tender nodularity in the posterior vaginal
fornix, and visible vaginal endometriotic lesions.'
This does seem to refer to GPs but whether the typical GP would know what they are feeling for I don't know since they are not experts in endo. I had an ovarian cyst felt by a GP but it was 13 cms so pretty big. I think the key thing is that you know what you want them to feel for and that if they don't feel anything it doesn't rule out deep endo. It would be useful though if they did feel nodules as you would be straight down the BSGE centre route then without having to be messed about in general gynaecology. But they would do another exam anyway as you say.
I always noticed blood in my urine when on my period and just thought “oh I’m on my period this is normal”. I had a laparoscopy nearly 2 weeks ago and have endo growing inside my bladder. I would mention it to your gp/consultant x
You just need to be persistent with them. You know your body better than anyone else so keep standing your ground. I didn’t wait long for a lap. Seen my consultant 13th Dec, had the pre op 2nd Jan and then surgery 16th Jan. I live in a small town so not sure if that had anything to do with such short waiting times xxx
They may ignore it as it's difficult to completely clean up period blood before urine testing and any small amount of blood mixing will test postive.
They always get concerned about mine because my urine can be cloudy, and tests high for white blood cells / proteins so they think there's an infection until I explain sometimes my mucus is quite runny, then it makes sense!
Yeah it's worrying that we have to push for treatment, and research ourselves; but it's your body you know something's not right so you're doing the right thing.
It’s worrying when they just instantly dismiss it as normal. There is definitely a long way to go of educating GPs about endometriosis!
I have been told to either take the pill or get pregnant, very concerning advice. I work in the NHS and would never give such shoddy advice to a client of mine x
Unfortunately the majority of GPs and general gynae aren't well educated in endometriosis, so will suggest either of those which could work for some women but it shouldn't be "the given advice" it goes against the NICE guidelines. My guess is that it's old fashioned advice and it means you'll keep going back for prescriptions. It also means they don't need to carry out costly investigations.
I was lucky after much switching doctors I'd found a GP whom listened to me and understood about endo because she has a personal interest in it.
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