Should I keep pushing to be tested? Or are the doctors right?

[PrueyBug]

Hi there,

I am really struggling. I have always felt like something was not right about my menstrual cycle. I’m now 22, and have been bleeding consistently and sometimes heavily since December 2023. This is the worst it has ever been, and I finally decided to seek treatment for something I have ignored time and time again in April.

Since then I have had countless doctors tell me I am imagining my symptoms. I have been prescribed steroid cream to be applied externally as my bleeding was described as a result of sexual intercourse. I have changed my birth control pill twice, but have been met with the same/worse symptoms. I had a physical exam, where I was told I had a visible cervical bleed, but this information was “lost” and my promised referral for an ultrasound was never made.

4 weeks ago I followed up on this referral, and was told finally by a doctor that I likely had endometriosis, and it was like a lightbulb went off in my mind. However, I was told it was unlikely I would be referred successfully for an ultrasound without “proof” of endometriosis symptoms - never mind that I have a list as long as my arm! As such, I was referred for a blood test with regards to my ovarian markers - and this came back normal.

As such, my request for an ultrasound has been denied. I live in the UK so this would be NHS, so my only other option would be to go private, as a doctor told me they have exhausted all options to understand my symptoms and I should just “accept” that bleeding is now part of my lifestyle for the forseeable.

Today at work I bled through an incontinence pad. I’m embarrassed, in pain and sad. I wish someone would recognise that what I’m going through is surely abnormal? My iron levels are incredibly low, and I don’t want to continue worrying about bleeding through every single day.

Does anyone have any advice on how to get someone to notice me? I’m sure there are others like me - I understand it can be hard to get a diagnosis, let alone a referral? I’m really desperate to finally get some answers, and any of your expert advice would really mean a lot to me. After finding this forum today I already feel tons more validated in my experiences - thank you to everyone for being strong and wonderful women. It makes me feel like I can do this.

[Scoops22]

hi

So I have been having symptoms for a few years and got diagnosed with fibro about 9 years ago. However I have noticed pain was getting worse around ovulation and I have lots of symptoms. I spoke to my gp who said it sounded like endo and to go on the pill. I didn’t want to do this without knowing so I paid for an ultrasound where they found an endometrioma. I went back to the gp and they said they will see if gynaecology will accept me but there’s a long referral wait. So I paid privately on Monday to see one and got a diagnosis. All together it cost me £325, so if you are in a position where you can speak to someone privately I would. He’s now referring me back to the gp for tumour marker blood tests but I am going to see him again in 6 months for a re scan to see if my endometrioma has grown. If you can go privately for this initial but I would recommend.

[Tangoandmax]

Hi there,

I’m beyond outraged reading your story. No matter what, they cannot leave you to continuously bleed without further investigation, especially if there is no contraceptive reason. It’s not normal for you to bleed anytime outside of period/or after sex and as such investigation should be offered. Scans/gyne referral.

My GP had pushed ultrasound after ultrasound when I continued to go back re. unexplained pain/bleeding. Unfortunately, they have a tendency to have uneducated people carrying out the scans and missing vital signs of endo, which delayed my diagnosis 8 years (still waiting for official can only be done after surgery).

I had bleeding from the cervix post sex which turned out to be cervical ectropion. There is a treatment for this, so at the very least you should be checked for that and treated by a colposcopy team. I bled every day on various pills they have asked me to take, I’m now on my fourth which has slowed the bleeding. And after my second prescribed iron course, I’m finally feeling a little more human.

Absolutely get a second opinion. Your GP practice might have someone with an interest in Gyne, if so you want that one. It’s not acceptable to just be told, there’s no proof we’re not going to investigate. Keep a diary of symptoms, pain/bleeding. That will help you spot any patterns in regards to your cycle. If they don’t take that seriously, make a complaint. I wouldn’t have the progress I’ve had in the past year, had I not complained about every single error, lack of competence shown by medical personnel.

It’s really hard to battle this disease, made much harder by the fact you have to fight so much to be listened to, have the appropriate investigation and treatment. You’re not crazy, you know something isn’t right, don’t let them tell you otherwise.

Good luck! X

[PumpkinPi]

hey, sorry to hear what you are going through. If you can afford to, pay for a private initial consultation with a consultant that also does NHS. If they think they it’s endorsed, they may add you to their NHS list.

[PrueyBug]

Thanks all for the really helpful suggestions - it’s extremely validating to hear that you have also had similar experiences and have been diagnosed. I’m going to look into a private consultation based on your advice and cross my fingers that this avenue might provide some answers! Thanks for giving me a little bit of strength to keep trying, I really needed it x

[Faylen34]

100% push for your scan. I would go as far as to say you should complain as its inadequate care. Your symptoms are impacting your daily life and you shouldn't be denied investigation or left to suffer. I would be going back again, take someone for support who can help you communicate across and tell them you need this ultrasound and referral. Just know you are not alone since I've been on here its sad to see how many of us have this initial battle with our GPs. I've learnt over last 6 months you have to keep pushing to be heard. I had to push to be taken seriously too at first.

Good luck x

[Brambledoggy]

Morning. If I were you I would print off your post (the original one you just wrote) and post it to my local GP and see what happens. Let us know the outcome. Getting help should NOT be this hard. Nina.

[Fulham85]

Hiya sorry your going through this its horrible. An ultrasound won't show endo but can check if you have fibroids. You need an MRI to confirm endo but they just won't do it. I'm in the same boat I got seen by gyno in Feb I've been on several meds ever since as things don't agree with me and had to change. Been heavily bleeding with huge blood clots everyday for 3 months now and docs have giving 3 different meds to stop bleeding and none of them have even slowed it down . I feel so down everyday as it affects social life , sex life and work life . Just feels like its gonna be never ending 😪 xx

[PrueyBug in reply to Fulham85]

I know exactly how you feel. I’m so sorry to hear that you are struggling, and I hope that you can also find the answers you are looking for. Please feel free to reach out if you ever need an understanding person to talk to. From the lovely replies on this post I can see that we have to keep our heads up and keep trying! We will get there xx

[KezMurr]

I'm so sorry you've been going through that. I'm shocked that you've been bleeding for so long and they're just breezing you off every time. What they said about the ultrasound is absolute nonsense - there's no way endo can be evidenced apart from scans like an ultrasound or MRI, however the gold standard for diagnosis is a laparoscopy. My scans were all clear but a lap determined that Iactually had stage 4 endo with multiple organs fused together. My symptoms were/are deep pain during sex and sometimes pain in my reproductive area when I'm going about my day. Also, if continously bleeding is not 'evidence', then what the hell is!!!? That makes me quite angry.

Do you have someone who could go with you to the next appointment and advocate for you? I remember being in my early 20's and I found it very hard to speak up for myself and I felt like I had to agree with the doctors/gynos even if I didn't or if I tried to explain that I didn't agree, they would just dismiss my concerns. Now in my mid 30's, I don't take sh¡t from any medical professional! But that took me along time. Where do you live? If you're in the Suffolk area, I'm happy to be your advocate

My suggestion would be to go private. Save up a few hundred and get yourself an appointment with an endo specialist who works privately and also within the NHS. Once you see them privately, then they can refer you for scans etc via the NHS so you won't have to pay. That's what I've done for some gyno issues and it was way quicker and much more effective than the NHS alone.

Have they offered you a smear test? Even though you're under 25, that should most definitely be considered as irregular bleeding should trigger that.

Keep your head up, and know that you're not alone xx

[PrueyBug in reply to KezMurr]

I’m from Wales, but thank you for being so kind as to offer to be my advocate! Going to try and take a leaf out of your book and stand my ground, but will ask my partner to come with me going forward as I’d never really thought to bring someone along (as silly as it sounds!).

As for the smear, I did initially ask for one and was referred, but upon arrival I was told that I’d actually been put down for a chlamydia test, as the notes the dr had sent over said my symptoms were consistent with chlamydia (came back all clear). Felt very embarrassed and dissapointed at the time as the dr did not mention chlamydia to me at all in the appointment, and honestly the experience put me off trying again but now you’ve mentioned it I think it might be time to push again and see if I can get one done.

Thank you for the information about the laparoscopy - that’s very very helpful! I’ve been under the impression that an ultrasound is the way to go from the drs I’ve seen so far, so it’s helpful to know that I still may not find answers through that avenue. I will definitely look into the private route, it’s very validating to hear that you found answers and are doing well!

Thanks again, your reply has been very informative and has made me feel much more determined to put my foot down going forward!

[BloomingMarvellous]

There’s a good symptom check list on the Endo UK site. Use it and also do a retro plus going forward period diary. Some online ones will even register a concern of endo.

Honestly what a shower the caregivers are. Keep pushing and tell them they are being unprofessional and you require proper care and assurance. Not sure what they were expecting from bloods as there are no reliably useful biomarkers for endo. Some of us get raised prolactin or CA125 levels but it’s not a slum dunk at all. Even so ….

[HT267]

Hi Prueybug,

I'm absolutely disgusted that you have been dismissed like this! Do Not let them tell you this is in your head. How can constant bleeding be psychologically manufactured. I would get a second opinion and or pay 200 ish pounds for a private consultation. There is definitely something wrong and you have the right to a good quality of life, don't give up

All the best xx

[PrueyBug]

It might sound silly but thank you for all your helpful advice and support, just hearing that there are others who understand is overwhelming - after being dismissed so often it’s a breath of fresh air! I have taken note of all your advice and it has given me determination to try again. Cant thank you enough, I’ve learned more here than I have from any medical professional. x