I've had countless ultrasounds in the past and told "its all clear, you've just got painful periods" and then sent on my merry way with paracetamol! I'm being seen by a new specialist who seems really on it and I've just had my results back from my most recent ultrasound and once again "all clear". I'm yet to speak to my specialist about these results but I feel so anxious that I'm just going to be dismissed again!
I did share these concerns with Dr before having the scan, she reassured me that a clear ultrasound doesn't mean there's no endo and definitely doesn't rule out having a lap, but I can't help but feel anxiety from previous experiences!
Has anyone else struggled with this anxiety from rubbish medical treatment in the past?
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honeyhills
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Hey! Yes!! You are not alone. At one point I nearly ended up on antidepressants due to constantly being told everything was normal and that it was 'psychological'. Push for the lap if that is what you want, I ended up screaming at my doc in the end and just refusing to leave the surgery until he referred me ( I know this isn't always a good thing to do but a girl can only take so much from a man without a vagina ) xx
Thanks so much for your reply! I'm glad to hear I'm not the only one! Why is it always the male doctors with zero comprehension of our pain that are like that!?! x
I know! We just have to stay strong and refuse to be dismissed. At the end of the day men will never fully comprehend the pain we endure. Keep fighting for the lap and don't worry, you are not alone ! Xx
I am currently going through the same thing, I had a clear scan too. My gp does nothing to help last time I called she asked me what do I want her to do. I now have low iron due to the loss of blood every month, the pain is horrific but I keep being told all is clear its so fustrating having to live like this.
Heyy! Sorry to hear your having such a shitty time with it, I can definitely relate. I’m 24 and got confirmation I have endometriosis last week. It took just under two years (majority of that was due to the pandemic so I feel in a weird way like a “lucky one”) my gp overlooked and minimised my symptoms; I would suggest checking if your gp can give you access to your medical notes (I did this and raised hell over the comments referring to my pain as “manageable” and “common” - I was fainting, being sick and having to take time off work nothing about that is common) after this I pushed for an ultra sound and got one just over two months later it pretty much showed nothing but a couple of cysts that aren’t strange for women in their early 20/s. But before the ultrasound even got back I pushed for a referral to a gyno specialist (I set my alarm to call the doctors every morning until I got it) through this time my dr had said if the pain gets worse go a&e .which it did one one occasion it was day 14 of my period and I clasped, couldn’t keep food down and had a screaming migraine I went to a&e alone due to covid and after being left sobbing in the waiting area for 3 hours was told the a&e GP didn’t see anything they could do and sent me home with paracetamol- I recorded the interaction and called 101. Once again the operator minimised my symptoms even saying “I’m a women, some of us just experience pain it’s apart of menstruating”... it was awful I wanted to cry and did, I’m active I’ve always played sport, always worked and had my own business so being made to seem like I was just having a pitty party when my whole life was being put on hold and turned upside down was a blow I just didn’t need. It made me angry in honesty and determined to get what I needed to prove I wasn’t mad. So I called my gp practice ever week, I eliminated any other potentials things that they could brush it off as; I asked for an early smear tests, bowel test, blood test and requested copies of my ultra sound in case the gyno specialist just in cases they hadn’t recieved them by my appointment (they hadn’t and if I didn’t take my own I would have had to wait a further two weeks for an anaylises instead of having the opportunity to discuss it with the specialist on the day). The gyno Dr was an amazing woman and when I broke down to her what I had gone through and how at every turn someone told me to take and ibruprofuen or tell me I had a viral infection. She was impressed about my scans and that I had requested my bloods. She referred me for a laparoscopy under the endo team. Due to the pandemic couldn’t confirm when it would be and i did think it would take longer than it did but after seeing her on April 29th I finally had my laparoscopy on June 16th. Before surgery they assured me that I was lower risk and based my scan age and weight I should be out in an hour and be home that evening. On the day of the surgery they said pretty much the same thing but asked me to also consent to a hysterectomy, which I did. Long story short my operation ended up lasting just over two hours and I had to stay over night. They hit a blood vessel which caused and artery and found Endometriosis in 6 places 2 of which they couldn’t remove as the additional level of surgery needed hadn’t been covered even with the added operation. They also found Adenomyosis and PCO - so I spent the night abs I’m currently at home healing up feeling pretty crap but relieved to finally know I wasn’t imagaining it all. I raised with my dr that I felt due to my age and even size my symptoms have been ridiculously under minded and I’ve been vilified as being some type of “hysterical woman” when the reality was and is I was just really fed up of people who weren’t living in my body telling me it was normal when everything about it felt horrible. I really do hope you get the answers your looking for soon and sorry for the long post. My tip if anything is take a paper and pen to your consultation and print outs of any parts of your experience you want them to really get into in your appointment. Push for a laparoscopy because a scan doesn’t show endo and certainly doesn’t show Aden either.
Ah I’m glad it was helpful! Please excuse the awful spelling and grammar 😭. But seriously don’t stop pushing, don’t stop asking for second opinions, if you finally have a positive conversation with a dr ask them to put it in writing so it’s on your file. So much of my journey was prolonged because dr’s/nurses don’t have the time to adequately update medical notes meaning whoever you get put in front of next starts at square 1 again. Wishing you all the best on your journey ✨
Wow. Thank you so much. This feels far too similar to my own story (something that is a reoccurrence since delving into the endo forums). It's sickening that medical gaslighting is still allowed to go on and that we have to continuously fight for the absolute bare minimum from our medical professionals who are meant to be there to help us. I've been in A&E twice during covid, the same as you in pain and alone and sat in uncomfortable seats for hours to just be sent home with mediocre pain relief. My boyfriend came home to me being in floods of tears screaming in frustration that it's an ongoing cycle and no one is listening to me! I'm so glad you had the resilience and inner strength to push through to get the result you wanted and the confirmation which I'm sure, as horrible as the news is, is still a relief to be able to say you have clear evidence and no one can make you feel crazy anymore! I've got a telephone appt with GP this afternoon so I'm going to harness your energy and use it to get my voice heard!
I know it’s crappy but you will get through this and hopefully you will get the answers you need!! Just don’t hold back keep pushing and make sure they feel that you are holding them to account( I even threatened to sue if my referral to a gyno was denied because legally they can not refuse to refer you). I went from feeling angry to feeling guilty for “moaning about the NHS” but your not moaning your holding a system that quite frankly overlooks the needs of women to account. I really hope your GP appointment this afternoon goes well and at the very least doesn’t add more stress to what you already have. Good luck hub 🧡🧡
I had 3 ultrasounds, all only diagnosed cysts and fibroids. I made the big decision to have a hysterectomy (there’s more history before the ultrasounds), went private and had an MRI. This showed stage 4 endometriosis which had never come up in any previous investigations. I worried it was because I refused to have the vaginal wand ultrasound but it sounds like that wouldn’t have shown anything anyway.I feel I was lucky to have had the MRI. The GP put all my symptoms down to a large fibroid but now I know what I know about endometriosis symptoms, I would have been pushing hard for further investigation. I am a lot older as well, so I’m at the other end where they will use perimenopause to explain pain and ignore what else it could be.
Use their own knowledge on them...... “we are both aware that scans don’t necessarily pick up other conditions like endometriosis. Therefore further investigation is warranted and I’ll need a referral for that please”.
If you get fobbed off... “why would you deny me the right to look after my body?”
Has anyone had any luck with mris over ultrasound? I dont know what to do at this point and im aware of the pain getting worse. And its every day, peeing, breathing and bowel movements arent even the same anymore.
So frustrating and upsetting hearing peoples storiesI was lucky I saw a really lovely female GP who obv knew stuff she suspected endo and I got an ultrasound done, when I called back for my results was a male dr who said yes scan all clear so I said ok then what now he sed you can go back on contraception even tho id just told him that we were trying to conceive he sed theres nothing on scan to indiacte a referall to gyne so that was that. So another period came and was back to agonising pains so I emailed my drs and demanded that I spoke to same female dr any way she refered me to gyne. Obv cos of covid I thut im gunna wait forever and called to ask approx how long she said at least 6 months until I even speak to one. So I decided to have a private consultation with an endo specialist gyne.... he was fantastic and had copy of my ultrasound he sed "you dont investigate scans you investigate symptoms" he sed my scan showed nothing. But my symptoms say otherwise so therefore I need a lap and investigate. My tests and stool samples all normal.
Sometimes MRIs can show stuff but he didnt see the point in wasting time and money when the only real way is through a lap.
And you need that lap by a registered endo speacilist, so make sure were ever your referred too has a specialist endo team.
Dont give up!
Its not on this! Makes me so mad that people get told that periods are painful get on with it....
They are not ment to be painful where you cant move , you cry in pain and scream, you feel like you are going to die! They are ment to be uncomfortable not PAIN, excruciating pain. It needs investigating!!!! X
That's such a good point that they investigate symptoms not scans! I'll definitely say that the next time I get to speak to specialist. Currently having to wait for ages to speak to gynae as well due to covid delays - so frustrating. I was put on contraception but its not working for me, was told it'd stop periods but I've been bleeding non stop for the last 7 days...moods all over the place and feel so out of control of my own body. My GPs idea to combat this? Add in HRT to balance out the progesterone from the double dose of pill I take now! Please no more hormones!! ☹️
I know all this messing about with our bodies is not good! Im sure some scans can pick up but the point isnt it doesnt and there is still on going pain and symptpms then it still needs investigating x
Im just waiting now... In saving to grt it done private but if I wasnt then Id be looking at 12mths at least for any surgery. Its so sad how the nhs has gone. And there are good gynes and gps out there who do take you seriouly.... just not enough !
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