I am terrified the NHS said no to MRI for endo as my he believes it is psychological and all in my head. I am terrified that I will get this scan and everything will be ok and then what is hat is causing this pain the bleeding the vomiting the sleepless a nights.
My life has turned 180 since having chronic pelvic pain is only occurs during periods and ovulation and is getting worse by the month.
Say that there was nothing found on my ultra sound what next
may I had I am currently over wither due to mirenna I gained double my weight in 2 years I’m using it and have Ben struggling loosing weight even at a calorie deficiliet and excersize
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Littlebug77
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Well done advocating for yourself and pushing for the MRI.
I totally understand your concern around MRI results. Remember, MRI, while it can provide diagnosis, is not the definitive diagnostic tool for endo. Sometimes the location of the lesions determine whether or not they show up on a scan and also whether or not the lesions are superficial or deep infiltrating. People can have extremely debilitating symptoms even with negative imaging, I know I did and have heard many others share the same.
The first time I had the MRI done it was negative and endo also did not appear on multiple ultrasounds. I believed that this meant I didn't have endo but this later proved not be the case, as it was diagnosed via surgery later on. However, I'm glad I got the testing done because I could cross it off the list and eventually got the surgery.
I was so disappointed when the MRI came back with no results because I was so hoping for answers -- I didn't get them that time around, but I did eventually get clarity. You know your body and you know the symptoms you are experiencing. Keep fighting for yourself, and take good care of yourself! You deserve clarity and proper treatment. I hope you can get the testing done and if it doesn't give you clarity, just know that it's just one of the tools available and not definitive it and of itself. Your symptoms are real and deserved to be heard and treated. Hang in there!!
I am just struggling to loose weight for the surgery my mental health is in the ground it’s a lot of money it’s about £500 for the scan out right. My ultra sound have come back inconclusive - thank you so much for taking the time to reply
Hi Littlebug77, I am so sorry to hear what you’re going through. It’s so tiring isn’t it? Stay strong and keep going, you know your body and you know what you are experiencing. Have you done a diary, where you write everything in that you are experiencing? This can help. Keep going warrior, stay strong x
hello thank you for replying yes I keep a track everything but I’m not listened to I have been having pale diarrhoea and every time I have a bowel movement or pee the pain is excruciating and I spot form my vagina the doctor was not interested told me it was normal or IBS meds which I already bought myself
Really sorry that you are going through this. I had similar symptoms and was referred by a GP eventually but the first GP I saw did fob me off saying that I should just have a baby and the pain would go away and just kept prescribing painkillers. The pain got worse and worse and I also had that excruciating pain when having a bowel movement. Then I saw another GP and he was like this is not normal. I had a laparoscopy which diagnosed the endo but had to have an MRI before I saw the specialist at the endo centre. As others have said it doesn’t always show up on MRI. Mine did though and probably I wouldn’t have needed the lap if I’d had the MRI first. I would ask to see another GP if you can. The first GP I saw was not keen on referring me to gynaecologist.
i'm so sorry this is happening to you. Your GP should not be jumping to blaming your mental health before properly investigating your symptoms. Have they referred you to gynaecology to investigate? if not, you should def request this. If they refuse to refer you, tell them to put in your medical notes that you asked for it and they said no. if you are making no progress with this doctor you could also book with another GP at the practise. You deserve medical care, you deserve answers to why you are in pain. Hang in there! I will be sending you loads of good thoughts.
It sounds like all this has completely stressed you out. It is horrible having dreadful pain and not knowing why, but I still wouldn't be disappointed if scans show you don't have endo. If you do have endo there is very litlle that can be done and it just gets worse and worse so if it is something other than that, it might be much better.
There are a lot of different things that can cause abdominal pain so if it turns out not bto be endo that doesn't mean it is "all in your head". For your doctor to even suggest this is extremely hurtful and insulting but sadly pretty normal, I think almost every woman on this site will have been fobbed off and told it's IBS, it's all in your head etc etc. and practiaclly every woman on here will eventually have got an endo diagnosis. I don't know why doctors are so keen to believe all their patients especially female ones are malingerers or hysterical. I guess it is a deep prejudice against women at the end of the day. But it is definitely not your fault and as you are in apin and suffereing this should be taken seriously.
I have to disagree with gatherings comment below MRI is regarded as the gold standard nowadays for diagnosing endo and often spots endo that can be missed on a lap if the surgeon is not brilliant especially adenomysiois which is frequenty missed at lap and causes lots of pain. I think. the issue with scans is who does them. A lot of sonographers aren't specialists and haven't receieved traning for scanning for endo. You need to get it done somewherere very professional with a specialist sonographer.
For me vomiting was never a symptom of endo but symptoms are different for different people. But very bad pain when you have your periods and when you ovulate does sound pretty typical.But even if the MRI doesn't show endo it could be many other things so it has to be investigated.Get the MRI and see what it says, if it says there is no endo shown tehn you need to go back to your gynae and work out what else it could be. If the gynae is unsympathetic and doesn't want to help find another one and get a second opinion. You know your own body better than anyone else and you must keep pushing to find the cause of the pain and not be put off by dismissive doctors.
Pale dirrahea that you mention and vomiting are both common with gall stones/gall bladder problems which cancause excruitaing pain. That can be easily checked with an ultrasound, I have gallstones and endo and wasn't aware that endo often causes them as a side effect of producing too much oestrogen. Might be worth getting this checked too.
I'm so sorry you have been put through all this, it sounds like you've been dismissed from every angle! Sadly I can empathise, i spent from the age of 11 going to hospital with left flank pain that was never explained and having periods that were making me vomit and bleed through clothes and bedding. Having a child did not help, being on contraception didn't help either, it just dulled the period pain but ny lower back was still bad. Having my second child was the kicker, as I had an emergency cesarean, so new stomach symptoms started. Things like extra bloating, pain outside my cycle in my tummy, pulling feeling, lots of noises in my tummy too. The vomitting has been an issue for me, usually when my stomach issues have flared bad, or if my period is bad I'll be sick, or if I'm having a migraine. Please please be careful of your teeth!! My doctor accused me of bad hygiene...I said no, my enamel is gone from vomitting so often! Brush them without fail after every time you're sick, I've forgotten in the past and now I have my teeth all knackered.
I'll fast forward now, had my first child at 18 (2010), second at 24 (2016) via emergency cesarean. By the age of 25 I was using a walking stick, my legs were buggered from nerve pain radiating down my pelvis. They thought I had lupus at first, but nothing was ever conclusive. I was often in A&E with severe pain in my left kidney, accompanied with blood in my urine 3 days after my period had finished. No infection found, no kidney stones found, nothing at all. They would shrug their shoulders and say it's all psychological because of my history of depression from abuse. It was soul destroying...how could depression cause blood in my wee? Around 2018 I took control of my mental health, reported my abuser to the police and began proper counseling. I was SICK of being told my mental health was the issue, so I took control and worked on it. Guess what...pain still there lol. I was having loads of issues with taking the pill so my husband and I chose to be finished growing our family, 2 was enough. So he had a vasectomy and I was able to finally come off the pill properly, after being on it for 15 years on and off. I began walking more, just little 1 mile round trips and gentle strolls in the local area. Having my second child made me balloon up to 13st 13lbs, pre kids I was a tiny 6st. I had to tackle the 2 things doctors jumped on me for, my weight and my mental health. Once my weight was down to 10st they had no excuse, the pain was still there, it was in fact way worse. I had started to notice that it involved my cycle! Something I didn't see before because my cycle was so irregular with the pill. I spotted symptoms climbing in the lead up, and dropping when I was finished. I could schedule when my pain would begin! It all flared with ovulation and periods! So 2020 I had a good idea what was happening, but sadly ...covid lol.
I didn't see my first gynae until early 2021, and he claimed that my symptoms were nothing to do with endo and a lap would be pointless. He said blood in your wee isn't endo...and endo is just a period issue. I left that call crying! Immediately I posted on here, asking what to do. A very kind user suggested I search the BSGE register and find a proper endometriosis specialist to get a second opinion, which I did. I paid private to make sure he was worth waiting for on the NHS, and he agreed that I showed all the signs of endometriosis. He wrote to my GP and requested to see me at his NHS practice, then he placed me on his surgery list as soon as I was a patient. I didn't get my surgery until August 2022, I was terrified they wouldn't find anything. All my ultrasound was clear, I had 2 kids so I was scared that meant I couldn't have endo (I believed the lies about endo causing infertility for everyone, in reality it effects 1 in 4 with endo). My surgeon said that if I wake up with just 1 surgical hole they may not have found anything, but more than that and they have for definite. I woke up with 4. I knew instantly, they found it, I'm not crazy!
I found out exactly what they found December 2022 at my post op (my surgeon had an emergency after my surgery and couldn't talk to me). He said he found extensive patches throughout my uterus and both fallopian tubes. As well as a thick band of adhesions that had glued my uterus to my stomach! No wonder my digestion was so crap! Severe endometriosis he said, and rare for the uterus and stomach to be involved in that way, he said he had only seen it a couple of times. I'm still in pain sadly, it did improve between August and October, but after coming off GNrH treatment it all returned again. But I know what it is now, I have a name!
I'll share some tips regarding pain control if you like? Non prescription kind
I hope sharing my story makes you feel less alone, you're not crazy and clear scans mean NOTHING. Sending lots of love and support!
Hi Thank-you for sharing your experience, I'm sad to say I've had similar, though no children, have you tried Vitex Agnus castus? its a herb I was on for a few years after my laparoscopy and endo. treatment, it regulates hormones but much gentler than danazol etc. it worked well for me. Best to find a herbalist for this to get the dose right. All best wishes X
Hi, sorry to hear you are having a hard time getting diagnosed it is half the battle I’m afraid.You know your pain and when it happens ,but please make sure the department doing your MRI are specifically for Endometriosis! I was diagnosed 36 years ago numerous operations but last year I went private with a endometriosis specialist he sent me for a MRI and it came back negative, but with all 5 of my other operations being in my file it couldn’t be denied .I had a laparoscopy in July and they found a mass wrapped around my kidney Ureter and a retroperitoneal nodule ,also endometrioma on my ovary , mass bowel adhesions and lastly adenomyosis in pouch of Douglas.My womb has been bent so far back he said iam completely distorted .My confidence in MRI is not there for positive diagnosis .I could have been left like this .I’m now waiting for MTD operation . Please ensure you emphasise it has to be Endo specialist doing your MRI and if it does come back negative,keep pressing for answers . Good luck hope you get sorted
So sorry to hear you're going through this. I was diagnosed at 17 and am now 32 I have excruciating endo the last laparoscopy however I was diagnosed 6 months ago with adenemiosis which is similar to endo but it grows inside the muscle - this on its own is very difficult to diagnose because they can't get into the muscle to investigate. I was put on zoladex temporary menopausal Injections and it almost completely vanished which my specialist said is a good way to diagnose it. Only option now is a hysterectomy which is a huge decision to make at 32. It's taken years to diagnose and years of mental stress worrying the drs thought there was nothing wrong and I was over reacting. Can I ask have you had a laparoscopy because that's the only procedure that can clearly diagnose endo. Endo tissue will not appear on a normal ultrasound scan xx hope this helps
Wishing you the very best for your forthcoming scan. Trust your instincts - you will need to advocate for yourself and push for next treatment steps if you are in so much pain. We're all here to support you.
With regards to weight loss, everyone's told that they need to 'eat less and move more' but it's really not that simple. I have a couple of suggestions below that may help:
* Eat protein at every meal (breakfast, lunch and dinner). By including protein in every meal you'll feel fuller for longer and less likely to reach for unhealthy snacks between meals. Be careful of 'low-fat yogurts' - many have a shocking amount of sugar in - best to stick to natural.
* Swop out unhealthy snacks for better options. Better options include hummus and veg sticks, apple slices and nut butter, a handful of nuts with a square of dark chocolate, a small handful of olives.
* Try to give your body a break from food between your last meal of the day and the first meal of the day, just drinking water, black tea or herbal teas during this time. For example between 7pm-7am or 8pm-8am. Even just a few times a week could make a difference.
Hope this helps - a good nutritional therapist (bant.org.uk) would be able to give you proper support with this.
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