I had an ultrasound last week and as expected they said they couldn’t see any obvious signs to suggest endometriosis, and said everything looked normal. However, the lady was very nice and told me to keep pushing my doctor for further tests and a referral to a gynaecologist as an ultrasound isn’t always conclusive.
It’s now been two weeks since my last period and I am experiencing the exact same pains I experienced in the lead up to my last one. I have a constant dull pain on my right side which every now and again turns into a stabbing pain. There is also some pain after I empty my bladder and I have lower back ache. I always assume I’m suffering from a UTI when this happens, but the tests always come back clear. Surely this has to be related to my periods?
I know that if I wasn’t taking the pill my symptoms would be so much worse. I have had periods before where I have gone to stand up from sitting down and colllapsed to the floor in agony. I use to faint and be sick which is why the doctor placed me on the pill at aged 13. I have been taking it ever since, and whilst it helps regulate my cycle it doesn’t alleviate the pain I experience each month.
I have a telephone consultation with the doctor today which I took it upon myself to book as no one has been in touch since the ultrasound. I just feel so deflated and want them to listen. what can I do to get them to listen?
I have made a list of all my symptoms and have an app on my phone to help track my periods. However, not once when I have gone to the doctors about my periods have they even asked for my symptoms. They seem to just brush it off as normal period pain.
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Hi I am exactly like this I have had several ultrasounds and everything has been clear but my symptoms keep worsening and getting new endo related symptoms. I have such bad medical anxiety that j will go for the Laparoscopy and they will tell me that there is nothing wrong and it’s all in my head. Stay positive and try to avoid stress and avoid triggers. Keep pushing you’ve got this !!!!
Unfortunately you just have to keep pushing. Endometriosis cysts can be seen on ultrasound, but lots of people (including me) don't have cysts. My two ultrasounds and MRI were all normal and I pushed for laparoscopy which found stage 2 endo. You frustratingly just need to keep asking and advocating for yourself. Good luck.
omg thanks for this I assumed because they can’t find cysts or the popped that I was just making it up I hope I get my op soon and get answers on me period no and I’m dying
Hi. Sorry to hear you are experiencing so much pain. Endometriosis didn't show up in an ultrasound scan for me. I had to have a laparoscopy to confirm and it showed I had mild endometriosis lesions, which they removed. However, the surgeon later told me that they were still trying to understand the condition and that he would see some women with very severe endometriosis who had no symptoms, as in no pain, etc, but discovered the condition when trying to get pregnant. And then there were others like me, who had seemingly mild endo, but with excruciating symptoms. Whilst he didn't provide answers as such, the fact he was humble enough to admit that they didn't know enough, helped me somewhat. Have you tried a tens machine to help with the pain at all? I have found that they don't take all the pain and sometimes aren't up to the amount of pain, but there have been enough times when a tens machine has lessened the pain and considerably lowered the time I was in agony. I wish I'd invested in one much earlier than I did.
Another question that might be worth asking is regarding your appendix. I started having a lot of pain when I was younger and after two years (with a GP who didn't take me seriously and thought it was in my head) I had my appendix removed. The surgeon came to see me afterwards to say that my appendix had stones inside, a cyst and had been at bursting point. It didn't solve the endo, but it did relieve the appendix pain. I mention this because of your stabbing pains on the right side.
The last thing to mention is diet. Both endometriosis and appendicitis happen due to inflammation in the body, so it's worth being careful about how much sugar, alcohol, etc you put in your body. I've heard some people having a lot of relief from endo after 12 months on a gluten free diet for instance. I personally did a candida diet, which solved a lot of symptoms for me, but sadly didn't get rid of the endo pain. Worth a thought though. Don't worry about what the docs say if they are dismissive. You know what you are going through. And I think generally you have to be the one to push for what you need. Docs don't often listen to all your symptoms as the current health model works in a way of treating one ailment at a time, rather than in a holistic way. Don't give up though. And we are now in a time when women's health is being taking far more seriously, which is great. Hope you get some relief and soon! xx
Hiya,Just wanted to say please keep pushing the doctor to refer you to gynaecology. I’ve had quite a few ultrasounds and several MRI’ s, but my endo has never shown on a single one. I’ve got stage 3 endo which was only ever discovered when I had a laparoscopy.
Yesterday I had another surgery after two and a half years of chronic pelvic pain which was dismissed as not being endo related. They found deep endo within the ligaments that support the pelvic organs and joint to the lower back….exactly where much of my pain has been! Now waiting for an appointment with an endo specialist for next steps.
It feels such a hard slog when the doctors tell you you’re fine, but please keep pushing - it may not feel like it sometimes but you really do know your own body best!
I can totally empathise. I had a scan yesterday but there was no sign of anything of concern. Strangely enough, the area being scanned was nowhere near the area where I'm experiencing pain. I think I've now got even more questions than answers...
Have a look at the NICE guidelines for endometriosis ( Google)about when and where people should be referred. These apply in England but should be taken into account in the other UK nations as I understand it. I had the bladder symptom you mention, the consultant told me that there were probably adhesions on my bladder and when it was emptied, it pulled on them as it shrank. From your symptoms I would say it is is pretty clear you have endo.
I've just had the same thing happen - nothing was found on my ultrasound so I feel a little lost. I was advised to go back to the GP and see what they suggest and a laparoscopy was mentioned. I'm waiting to hear back from my GP to see what is next.
Hello! Same thing was said to me and I pestered the GP. I am now booked in to see a gynaecologist in November- honestly the waiting times are so long! Fingers crossed you get referred too
I spoke to my GP this afternoon and they said that the referral to a gynaecologist would not be accepted because nothing was found so they're treating me for menorrhagia. I refuse to have the pill etc due to my Mum having hormone related cancer. So I have to continue trying tranexamic acid, even though before referring me to the ultrasound she said that she thought it was very likely I had endo.I completely understand how you feel with nothing being found on your ultrasound. I feel so lost and as though I'm now going to have to be onto the GP all the time.
I've had a letter to book a smear, which I'm dreading as I know it's going to be painful for me. But now that it feels like endometriosis has been ruled out, I feel as though I'm making everything up or rubbish with pain.
Did you keep onto the doctor with every symptom you were having? I'm open to any advice!!
I hope you feel better now that you have an appointment with the gynaecologist.
Hello,I’m really sorry to hear that. They should be doing more tests if they suspect it’s endometriosis.
I arranged a call with my GP and just spoke down the phone at him as I was sick of no one listening. I listed every symptom and told him I wanted answers as I dread each month. This is not the first time I have raised concerns though. I’ve been back and forth over the years since my periods started so we are talking 10+ years.
Definitely go for your smear appointment as I can’t stress enough how important it is. I remember being so scared but the nurse put me at ease and it was over in no time. If anything it was less painful than my ultrasound as I had an internal one also.
Keep pestering your doctor. You are more than entitled to a second opinion as well so it may be worth asking to speak to another GP.
Thank you for all the information!! I think I'm going to have to keep onto them. The female GP who referred me for my scan and who I spoke to today is the first one who seemed to listen to me and is the person who said about endometriosis. Previously when mentioning symptoms of my periods, the male GP would dismiss it. 3 years ago, I passed a big blood clot with my urine and he questioned whether I was on my period rather than me knowing it came out with my urine (after keeping on and being given a urine test, it was confirmed I had a bladder infection).
My previous smear and other examinations have been painful so I have a lot of anxiety around it all. It's all very disheartening as I feel like I'm making things difficult 🤦🏼♀️
I will consider asking for a second opinion. Thank you for your advice!!
Hey…..I’m on year 4 1/2 and have only just had my MRI scan 🙄 don’t give up and settle for being brushed to one side!! Keep going back even if it’s every week! Eventually they will do more scans and test even if it’s just to stop us moaning to them 🫣 but they have no idea the pain, stress and upset we all go through!! Keep ringing for appointments don’t let them put you off!! You will get results 🤞🏼Even if it has to take a while! Best of luck x
It's so shit how we have to battle to be heard. Scans rarely pick anything up, all they do is add to our anxiety I have all your symptoms & after years of fighting, i had a laparoscopy, which revealed Adenomyosis.
Even after my diagnosis i was still medically gas lit! Told to ignore my symptoms & basically get on with it. So i went down the Complaint route & now i am waiting for a hysterectomy.
Keep pushing, u deserve the right help & treatment 💖
Keep pushing with your doctors, I have the same symptoms on my right side too and was being treated exactly the same until I ended up in hospital because of the pain.
I went for scans etc and they were all clear and it is so disheartening. However after a couple of months I got somewhere and I am now waiting for my laparoscopy for confirmation of endometriosis.
Keep pushing and don’t back down and you will get the answers! Hope you’re ok x
Sorry to hear this, but keep on pushing! I had the exact same!
I went for multiple ultrasounds and all were clear. I had to change doctors and have referrals from doctors from my times in AnE to get them to put me forward for MRI's and internal scans.
Finally diagnosed this year and on a surgery waiting list.
I know it's frustrating and soul-destroying, but keep on pushing, it's your body and you know for certain when something isn't right.
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Feeling deflated
Severe pain but clear ultrasound?
Ultrasound Clear not sure next step? 
No endo found in Lap, feel deflated :(
Ultrasounds
