Help with diagnosis- could it be endo?

Hello, I came across this forum when googling symptoms. I am 31 and live in Scotland. I first went to see my GP in October last year due to very painful periods, stabbing and cramping pains throughout my cycle. They took a blood test to check for PCOS which came back negative. My pain continued so I saw another GP a month later who started me on deogesteral pill and also referred me for an ultrasound. The pill did not suit me, made me very depressed and irritable so I stopped taking it after around a month. My pain has continued to get worse, I now have bloating, extreme pain when my bladder is full and when emptying my bladder. I am also feeling nauseous most mornings and have really bad fatigue. I feel exhausted constantly and sometimes light headed. When I have my period the pain is excruciating in my tummy, back and legs.

I had my ultrasound afew weeks ago and that was clear although they mentioned a lot of gas in my bowel. The GP surgery phoned me to come out n for a blood test, which was the CA125, also negative.

I am not sure what to do next, every test they have done has been fine. But I feel terrible!! I feel like the dr will think I'm a hypochondriac! I have another appointment on Friday but have no idea what to say. Can anyone help? Could my symptoms be Endometriosis and if so what should I be saying to my GP.

Thank you for any advice xx

11 Replies

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  • Hi, it sounds like it could be, your doctor sounds like she is doing all the right tests so hopefully she will refer you to a gyne, endo is only diagnosed through a laporscopy,although can sometimes show on scans, it's not conclusive,

    Good luck xx

  • I think you have a lot of the symptoms. You need to ask for a gynaelogical referral. Ask your gp, based on your symptoms, if they think it could be endo. It can be a long process to get diagnosed so the sooner you get that referral the better really. Hope you're feeling OK today.

  • Thank you x

  • All the symptoms you have could point to endometriosis (although that doesn't mean they are). See if you can get your GP to refer you for an abdominal MRI which can sometimes show endometriosis. You might find the waiting list for a consultant is much longer than for an MRI but it might also be that your GP is not allowed to refer for and MRI. Make sure you see a consultant from the BSGE list (which you'll find online). These are the only consultants that should be doing a laparoscopy to look for recto-vaginal endometriosis. This is where it occurs in a hard to get at place called the Pouch of Douglas. If you're getting a lot of gas then an endometrial nodule down there could be pushing on the back passage and causing bowel problems. It might also push the uterus forward causing pressure on the bladder.

  • Thank you so much for the replies. I'm so glad I came across this site. I'm not sure if I can ask for referral to a BSGE consultant as there are non in NHS highland, the closest being NHS Grampian. I will ask my GP about an MRI. Is there anything I can do in the meantime? I am starting a new job next week with 14 hour shifts.... It's my dream job but am worried about managing it.... I'm reluctant to try anymore contraceptive type treatment as they have all made me feel so sad and crazy!

  • I don't know what to suggest for the pain as think that's so individual to the woman. However, I can tell you that I've had real problems with fatigue and lethargy. Was getting to the point where it was the norm for me to have a nap pre school pick up daily, despite a good nights sleep. I did my own research and have been taken a herbal remedy which helps with things like fatigue, stamina, concentration, immunity etc. All great for endo. Been taking it for almost 2 months now and I'm starting to notice a real difference. I have more energy, get through most days without a nap (!) And generally feel mentally and physically stronger and able to deal with my endo. The way I figured it, it couldn't hurt to try it so that may help you in the meantime.

    Hope that helps as a starter!

  • Hi - an ultrasound rarely shows peritoneal endo (the most common form) and a CA125 is not a diagnostic test for endo.

    So in a way endo is more likely now these have come back negative because they have ruled out other things. Unfortunately in Scotland it is not a simple matter of just going to a GP and requesting a referral to a BSGE centre as you don't have NHS Choices. Outside of England you will usually have to have some evidence of having severe disease before being referred to a centre and will usually have to go through general gynaecology first which can often defeat the object as they often miss deep disease. You do have symptoms that indicate possible endo affecting your bowel that is usually on the uterosacral ligaments and this should be dealt with in a centre. I recently wrote a letter for someone in Scotland to take to their GP asking for referral and will be posting a template soon - this should also apply in Wales and NI.

  • I saw my GP this morning and have come away feeling a bit fobbed off. I gave her a list of all the symptoms I've been having and when they are worst etc including fatigue, pain when bladder is full, pain during sex, stabbing and cramping pains from ovulation until my period ends. She asked if I want to have children and when I said no she advised I have the mirena coil fitted and it should help all my symptoms. She didn't mention being referred anywhere for investigation. Is this normal to have the coil fitted without having a lap to check for endo first? If it is endo will the coil help? Not sure if i should go ahead and try the coil or go down the route of a private consolation somewhere. I'm in agony for 3 weeks of every month and I really can't cope with this any longer! I feel like my GP is dismissing it because my scan and bloods are fine

  • Hi - the mirena might help with periods but is unlikely to do much if you do have any sort of established endo affecting your bowel. Can you hold fire for a few days as I think it will be worth sending a letter requesting a referral to a centre. You are entitled to a referral to general gynae anyway under NHS protocol as that is the next stage after contraceptives and you have already tried them to no avail, but you really do need to try and get a referral to one of your two endo centres. Seeing them privately would certainly be a way of getting through the door if you have the funds but you need to prepare for such an appointment. I'm still working on letter templates as there are so many different scenarios to cover.

  • Thank you for your help. I have a consultation with the family planning clinic at the hospital about the coil so I am going to tell them all my symptoms and am hoping they may be able to help with a referral to gynaecology

  • I went to have my coil fitted last Thursday and it was horrendous. I had local anaesthetic in my cervix but the pain was unbearable. I was shaking, sick and felt like I was going to pass out when they tried to dilate my cervix and tried to fit the cool. The mirena wouldn't fit and after 40minutes of trying they fitted the jaydess coil instead. 3 days on I am still in a lot of pain, I also have a sharp stabbing pain in my lower bowel that comes and goes that I didn't have previously. I feel very upset that the GP suggested the mirena thinking it would stop my periods and I've ended up with the jaydess which is unlikely to stop periods and isn't licensed to help with pelvic pain!! I didn't want it for contraception so feel the whole procedure was pointless. I'm really not sure what to do now. I'm still in pain daily, pain with going to the toilet, fatigue and nausea, I've put on weight as I've not been able to go to the gym or do any of my hobbies and that's getting me down too.  Please can any one advise me what to do next? I really can't go on like this 😢

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