Pain for 2 years, ultrasound was clear

Hi , I'm hoping someone can help.. I've always had really heavy periods and bad period pain. I fell pregnant and had pre-eclampsia, an emergency c-section and placenta abruption, for months after I wasn't on contraception and one day at work suddenly had a strange pain on the right side of my lower abdomen. First I thought I'd pulled a muscle or had a stitch, then the pain just didn't seem to go away. Every month the day before my period the pain would return and last til day 21 of my cycle. The pain was and still is localised. I got on with it and didn't contact my doctor purely because of worry as to what it could be causing my pain. I went to the doctor and asked to go on the combined pill. I noticed that my pain had gone for the 3 weeks of taking the pill but would return during my period week. I decided to go to the doctors and explained everything as I was having abnormal bleeding whilst taking the pill and she sent me for examinations and a pelvic ultrasound which came back clear. Nothing was done or said after the results came back clear but I'm still suffering. I restorered to taking my pill packets back to back and having a period every 3 months but it no longer keeps my pain at bay and still feel it every day, when I sit up in bed or sneeze it pulls, I don't notice it every day now but not sure if I was just getting that used to living with constant pain. My periods aren't heavy and I don't suffer period pain anymore apart from the pain this post is about but I'm assuming that's down to the pill which has calmed my periods.

Can anyone tell me if this maybe sounds like endemtriosis or if they've experience something similar.. My doctor asked what I thought it could be and I did say endemetriosis and she agreed it could be. I'm only 24 and do want more children I'm just worried if when me and my partner try it might be harder this time around.

Thank you in advance x

15 Replies

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  • hiya, yeah it does sounds like endometriosis. I have had scans and everything and they've all come back clear and I've had all the symptoms you have. I'm under a GYN for the last 4 years and they are still saying its endometriosis. Endometriosis very very rarely shows on scans so it definitely sounds like that you have it xxxxx

  • Thank you JL92 for such a quick reply! Thank you I thought so.. what do you suggest I do now see my gp and ask for a referral to a gynaecologist and see what they say? Xxx

  • Awww your welcome I know how you feel it's horrendous. Yeah if you go your GP mention your symptoms and ask for a refferal, he might try and put you off and ask if he can "wait and monitor" your symptoms. Don't be put off and demand a refferal it's a horrible disease and it's only gets worse untreated. Good luck you can message me anytime. I also have the disease it's horrendous xxxxx

  • Thank you so much! The doctor who sent me for an ultrasound over a year ago was so nice and understanding but she's left now, if my new doctor tries fobbing me off I'll say well it's been 2 years already. I've just sneezed and it pulled so bad I curled forward and my 3 year old Alfie said ''mummy I told you not to fall over'' haha, the pains not unbearable I'm so used to it now and I'm sure others who suffer the disease have it worse but it's the fact it shouldn't be there and I'm still affected every day, and it does hurt! Thank you so much, I'm going to make an appointment so I can speak to a specialist xxxx

  • Haha kids are great arnt they!😂 Yes you should definitely go to your GP and get a refferal to a GYN. Don't let them dismiss you (they are good at that). Your right, your entitled to be healthy and lead a healthy life do anything that's causing you otherwise should be investigated and treated. Good luck! Xxxx

  • They sure are! Angel with horns this one though! Thank you 😘Xxx

  • My first ultrasound showed a hydrosaphinx and fluid in my bowel loops (actute abdomen from PID caused by a leaking endometriosis). At my first lap i was diagnosed stage 4, my diseased fallopian was wrapped around my bowel with my ovary and endometrioma stuck underneath it. I was sent to a BSGE centre under urgency. Well they decided to run another ultrasound before operating which supposedly showed NOTHING. Both ovaries were supposedly seen, i had no cyst, no hydrosaphinx, nothing? I had to convince my surgeon to operate which was ok "we'll remove adhesions and endo". I was put down for intermediate surgery. Complex but not major. During surgery it become major, just like my first surgeon knew and said. Yes my diseased fallopian was still wrapped around my bowel with my ovary and endometrioma under it! And i had deep infiltrating endo everywhere! I didnt have 1 spot of superficial. So much for that second ultrasound, eh!?

    Good luck. Hope you get it sorted xx

  • Oh my god, you poor thing that sounds horrendous, I really hope your in good health now? Can't begin to imagine the trauma and everything you went through. You've given me a bit of hope with you story though if you don't mind me saying. I was reffered to GYN in 2010 due to severe period pain and really heavy periods, they did an ultrasound and discovered I had fluid in my Fallopian tube and discovered endometriosis. They did nothing about this just sent me away with anti imflammtorys and told me they'd re scan me in 6 months time. I went back in 6 months for the scan they discovered not only had my endometriosis was in other places I also had fluid on my other Fallopian tube. They still sent me away with different medication and told me to come back in a few months time. I went back and the did another scan and apparently it came back normal! How is that even possible?? My symptoms never changed in that whole time and at times got worse. 7 years on, I'm 24 now and still waiting for a laparoscopy. Whether I get one or not is another story 😢 Here's hoping. Thankyou for sharing your story and I hope your in good health now.xxxxx

  • Dont worry i shared my story to give you hope. A clear ultrasound does and can mean nothing! Hopefully surgery failed for me .. I remained symptom free for around 4 weeks then it all come back with avengence. Ive been under gastroenterology, dont see gynea until 24th of this month! But dont give up, like i said a clear ultrasound can mean nothing, keep plugging for a lap! By the sound of it you shouldve had one already. The extent of endo cannot be seen/known without one!

    Good luck, hope they sort you out! Xx

  • Unfortunatly* surgery failed for me

  • Thankyou so much, you've given me so much hope. I've managed to get them to push my appointment foward so I've got an appointment next Wednesday. I'll be definitely saying I want this surgery doing, can't go on like this. Xxxxx

  • No i know .. Its ridiculous! No idea if it depends on the day youre ultrasound or the sonographer. My first ultrasound was so bad the hospital sent the results back to my gp as emergency. My first lap showed left side endo only. By time my second ultrasound come round i felt worse to the point i knew it had spread. Was disgusted when my BSGE specialist told me my ultrasound was normal and i didnt even have a cyst. Well more fool him for not listening to me cuz when they went in it it was discovered that i had infiltrating endo not just on the left, but the right too! Xx

  • I did get lucky in that my gp and first surgeon where supportive! But i was accute. Id suffered for years in silence until i become drastically ill after a sexual assault. My first surgeon wasnt an endo specialist so opened me then shut me straight back up! I was in theatre for a whole 5 mins! But he put me straight forward for the lap. It was the specialists i had to fight! And i find it most insulting that its usually men who have no idea. My first appointment with a member of his team was straight forward. "You have a 6cm and in someone your size thats massive we have to surgically remove it" (im the size of an 11 year old child). After that it become an uphill battle. He was downright rude after surgery surgery too and condescending at my post op. Not looking forward to seeing him this month to tell him ive not only been ill, but been in agony for months! And to make matters worse ive moved and my new gps are nowhere near as supportive! Just the same olf 'ibs' diagnosis! Xx

  • I had severe endometriosis which went un-diagnosed for over 15 years. I went back and forth from the GP constantly and they said all the pain must be in my head, they ignored my chronic fatigue and lower back pain. I then noticed it started to hurt when I sneezed but I thought they'd just laugh at me if I went back to say I had to hold my side when I sneezed as I felt I was going to split something open.

    Fast forward and I am now 43 and have had to live with the huge consequences from my endometriosis not being recognised early. Suffice to say, the pain when sneezing was because my left ovary was stuck fast to the back of my cervix, which was stuck to my ureter (tube running from kidney to bladder) and all this was stuck to my bowel. My left kidney was failing as endometriosis had started to strangle it. Whenever I sneezed all that area of organs and adhesions were put under massive sudden pressure - no wonder something as simple as sneezing hurt me so much. Mine wasn't a normal case, but I do want to get across that things hurting when you sneeze needs to be taken seriously.

    I don't want to scare you but that's what can bubble under something as simple as a sneeze hurting, so please make sure you get a referral from a GP ASAP. The sooner it is diagnosed, the quicker you can be getting treatment. It was too late for me, I wasn't diagnosed until I was 38 and had 6 years trying to conceive with no luck. I eventually paid an extortionate amount for very major surgery to radically remove the endometriosis I had, after other laparoscopies did no good and symptoms returned. While my big operation has brought some relief at last and a better quality of life, I will never be free of it, I would have done anything to be able to go back and push the GP into recognising this pain I had wasn't just in my head. I wish I'd fought them harder as that ignorance ruined my life. Endometriosis is an exceptionally cruel disease and the sooner you can get in to see a specialist the better, if you do have it of course. I had an extremely aggressive form which did show up on an MRI but a lot of cases will not show up, and certainly not on a ultrasound. The gold standard is having a diagnostic laparoscopy. If you do get it diagnosed, depending on the severity, make sure you see an experienced consultant too. My initial excision surgery caused more problems due to the lack of skill of the surgeon. If there is any bowel involvement you must make sure you see an experienced consultant - and the lovely ladies on this forum can help with giving you those contact details if you need them.

    My biggest piece of advice, don't be fobbed off by doctors. Demand to see a specialist. What I have learnt most on this journey is that the buck stops with you and you have to do as much as you can to help yourself and don't be afraid to fight to see the right people, it can make all the difference. You've got age on your side, and time to look at options if you do have endometriosis and that will help if you want to have more children, a lot of people an still get pregnant with endo, but some others will need IVF.

    Things were left too late for me to have a family, so please go for it as soon as you can to find out more.

    All the best with it all. Xx

  • Hi, sounds like you've been trough the mill and back! 😩 Sorry to hear this. Thank you for your reply, I'm off to Tenerife in a few days so going to sort it when I get home. I'm definitely going to try and push it, even family or friends don't seem interested and act like it's nothing when I explain how it feels or go to bed wth a hot water bottle. I'm so glad people like you actually listen, understand and are able to advise me. Thanks again for the advise xxx

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