All the symptoms of OC but nothing seen on pelvic ultrasound or TV ultrasound and CA 125 of 11

[redthedog85]

Hi girls!! So my story started 4 months ago going to my GP with unusual bleeding, pain during sex, bowel and bladder changes and pelvic pain. Fast forward to now it has been a monumental struggle to get my GPs to do anything but with a lot of pushing I have had a pelvic and transvaginal ultrasound done and a blood test.

Over the months the symptoms have steadily worsened, especially the pelvic pain. I can't get comfortable when sitting and sleeping is a nightmare. While standing I get shooting and sharp pains all day long in my sides, back and groin. My appetite has also been changing.

When my CA125 was done in September it was 11, it hasn't been done again since. Also there was nothing apparently visible of concern on my ultrasounds.

My GPs are reluctant to do anything else to find the cause of the pelvic pain or other symptoms and have told me it's all hormonal and I need to go on the pill and get the coil. I wasn't impressed with that conclusion. An actual option I was given other than the pill and coil was "do nothing".

So my question is, has anyone else experienced this kind of thing and carried on pushing to find the answer and actually found it? Should I accept that if there was something it would be on the ultrasound?

I don't know what to do next 😕🥲

Thanks in advance for ANY advice xxx

[carrotmunch5]

Hi redthedog85Sorry to hear you are going through pain... Sounds like a lot of symptoms I had when I was younger. Have you got endometriosis? Can you ask your GP to refer to a gynaecologist?

Hope it will get sorted soon.

Norie 🩷🙏😊

[redthedog85 in reply to carrotmunch5]

Hi Norie! 😁

Thanks so much for your reply. That was a gynecologist that told me it's all hormonal and to go on the pill. He mentioned endo but then wasn't keen to explore further whether it is that. My friend has endometriosis but her experience is alot different to mine. My periods have now regulated and are light and not anymore painful than the pain I have in my pelvis all day, every day.

I just don't want this hormonal conclusion to turn out to be something else years down the line and realise I should have pushed more. I'm not going on the pill or getting the coil. I just want to know of anyone else had been brushed off like this.

What was your experience at the start?

🙂🙂

[carrotmunch5 in reply to redthedog85]

That was a gynaecologist! 😅 Same here, my friend had endo, and her symptoms were a bit different from mine but then again, these things affects us differently. When she went to see a gynaecologist, he didn't want to do much about it, actually he cancelled her appointments a couple of times. When I saw my gynaecologist years ago, twice, they didn't want to do anything either. I don't know about endo, they didn't seem to be interested in it? So I just left it. Then years later, got OC, now can't get rid of it. It's too late to regret but I couldn't help thinking I could've done something more?

Do whatever feels right to you. Your body and you the one who feel your body. Glad to hear your period is regulated and lighter.

Xxx

[redthedog85 in reply to carrotmunch5]

Yeah a gynaecologist said that to me!! 😅😅 my friend had to push for years and years to get her endo diagnosed. Why do they make it so hard when they're aware it's often overlooked and ignored? 🙄 Did your gp do anything for you at all when you went twice years ago? What were your symptoms? I just want to know what is causing this amount of pelvic pain along with the other symptoms cz there is no way it's all hormonal and in my head. If the ultrasound is showing nothing then I'd like a more detailed imagine process done. I'm so sorry you were dismissed and not listened to and now you can't get rid of it!! That us such shocking treatment! Absolutely awful 😢 xxx

[carrotmunch5 in reply to redthedog85]

I knew it wasn't hormonal. Something else causing pain in pelvic area, and my back. It was soooo painful. I often hear similar stories with endo. I really hope this will change one day and take in more seriously. It might be able to avoid getting OC in later life.

Xxx 🙏🩷😊

[redthedog85 in reply to carrotmunch5]

I know mine isn't hormonal either. Should they just stop men being gynaecologists? 🤣🤭 my pelvic pain is taking over my life and I really don't want it to. I've been speaking to a women whose Cervical Cancer was ignored for a long time too. Was told it was a vitamin deficiency! 🙄 She ended up having to go private. That's what I have considered doing too. A lot of people have and we shouldn't have to xxx

[Alice77]

I was also dismissed by a Consultant Gynaecologist after scans and examination showed my ovaries as clear. My GP felt there was more,as I did, and because my CA 125 was 1000plus and I was 70 I managed to get a CT scan which showed peritoneal cancer at stage 3C.

I don't want to worry you as in your case the explanation if far more likely to be something else. Primary peritoneal cancer is very rare and usually occurs in post menopausal older women but I mention what happened in my case only to stress that if you feel there is something wrong you should not be put off by what the experts tell you. You know what your body is telling you so push for a scan. If your GP is unhelpful go to another one and take a written record of your symptoms with you. Best wishes for a happy outcome.

[Alice77 in reply to Alice77]

Sorry meant to say push for another scan...MRI can often show up more.

[redthedog85 in reply to Alice77]

Hi Alice! 😁

Thanks so much for your reply and advice. I know none of us experience exactly the same with this kind of things but you and carrontmunch5 (great username 🤣) have spurred me on to find another doctor and to keep trying to find out the cause of the pain. I'm so sorry you were dismissed too!! This is what worries me, the amount of women I've chatted to since this started in September that have been in the exact position as me is shocking 😠 I read a few articles about everything women go to the doctor about getting chalked up to hormones 🙄 it's so lazy of doctors. "Just go on the pill" isn't good enough for me. It was never invented as a cure for anything. Dunno how some of them sleep at night knowing they have taken away a woman's chance to do something about what is happening to her by making them feel hysterical and that it's all in their head xxx

[wendydee]

I was about two years before I was sent to a gynae specialist and know how frustrating it is when you think something is wrong. All I can suggest is join ovacome and download the symptom tracker, record all your symptoms and then print it off to take back to your GP. There’s also a helpline number on there which may be helpful to you. Good luck.

ovacome.org.uk

[redthedog85 in reply to wendydee]

Hi Wendy! 😁

Thanks for your reply. I'm finding so many more women not listened to than are 😕 that's very scary. But at the same time it's a comfort to not feel so alone. I am going to keep a good log of things and be more prepared going to gp appointments. I'm not usually bad at sticking up for myself or others or questioning things that don't make sense to me but the gynaecologist saying it was hormones totally took me by surprise and after I'd left there was a million things I should have said 🤣 I've just had a read of your profile, sounds like you had a long struggle! So sorry you went through that. Very glad you are in the clear now ❤ xxx

[wendydee in reply to redthedog85]

In my case it was ‘stress’, ‘perimenopause’, ‘TATT’, anaemia, finally she referred me for investigations for fibroids but it was ovarian cancer. The scan showed mine though although it was at a very early stage. I had 3 different types of scan then got referred to a gynae oncologist and was in for an op witching 2 weeks. That was many years ago though. I now work voluntarily with supporting gynae oncology patients and the women in our support group always say…..’I JUST KNEW THAT SOMETHING WAS WRONG’ . t the Ovacome chart has the advantage of being recognised by GPs. I wish it had been around when I was trying to get access to a diagnosis. All the best to you. xx

[redthedog85 in reply to wendydee]

Thank you so much for sending me that symptom checker! 🥰🥰 So useful! I have experienced most of those things on and off but when I'm in front of a GP my mind goes blank cz I'm nervous so that will be so much better for me. I can never remember what happened when. If I've felt unwell in the past and panicked about symptoms they have calmed down fairly quickly but this is my 4th month of this. I know something isn't right, like you say the other woman have said. Did you have Ultrasound, CT and MRI scans before they could give you a confident diagnosis? I'm just not 100% convinced the Ultrasound scans are enough to rule anything out if the pain and other symptoms are persisting and some are getting worse. Surely if they were enough they would have shown something causing the pain. That's what keeps going round in my head xxx

[wendydee in reply to redthedog85]

Im glad it was useful, you can record and print out to take to your appointment. My OC was 20 yrs ago, so things may have changed. I had an ultrasound, then a more powerful ultrasound, then a trans-vaginal ultrasound and a CA125 blood test, which was 545, then a physical and internal examination with the Gynae oncology specialist. He thought I was showing enough symptoms to operate urgently. He operated within 2 weeks. Did a good job (so far!) Let me know how you get on, or for more expert advice give the Ovacome helpline a ring. xx

[redthedog85 in reply to wendydee]

I will let you know how I get on 😁 my bf printed me 20 out 🤣🤣 we don't have much hope this will be over any time soon.

My gp ditched me today, I got a message saying I was no longer registered with them with no reason given. I've never complained to them, all I've done is push them to find out why I have this pain (aka do their job properly). I've never ever been rude to them or anything like that, I know people can get emotional about this kind of thing, understandably, but I've never said anything to them negatively. So I've got to start again but really I was getting nowhere with them so this is probably a good thing.

Had really strong shooting pains down my right side all day today, had paracetamol and ibuprofen and it's made zero difference. I'm ready for this pain to just not be there xxx

[wendydee in reply to redthedog85]

If I were you I’d ring the ovacome helpline tomorrow (office hours) It’s 0800 008 7054

[redthedog85 in reply to wendydee]

Thank you!! Do they have a WhatsApp too? I think it might be a good idea for me to get in touch with them 😊😊 xxx

[wendydee in reply to redthedog85]

This is from the Ovacome page:-

Ways to get in touch

Call us on Freephone* 0800 008 7054.

Request a 1 to 1 Zoom or Skype call.

Email us at [e-mail]

Send us a message through the instant chat box at the bottom of your screen.

Send us a text message, using SMS or Whatsapp, on 07503 682 311.

[redthedog85 in reply to wendydee]

I've sent a WhatsApp this morning. I work 9-5:30 every day through the week and I get terrible signal so I thought a message would be better 😊😊 xxx

[wendydee in reply to redthedog85]

Well done. Wishing you all the best with getting this more sorted xx

[Leniko]

I also suspect endometriosis for your pain. Do anti-inflammatories like Advil help?

[redthedog85 in reply to Leniko]

Hi Leniko 😁

Thanks for replying! I've tried a few anti inflammatory and they don't make much difference. The feeling is such a strange pain, never felt anything like it. I have a friend who has just been diagnosed with endo after a long awaited Laparoscopy so I've been chatting to her. She describes her pain as being worse/unbearable round her periods but nothing the rest of the time. Mine is all the time and is a constant dull ache with short sharp bursts of pain in many different areas on and off. Sometimes I get stitch like pains in my sides when I breathe deeply, often I have a pain right across my lower belly and in the tops of my legs sometimes. Going from sitting to standing I can't stand up straight for a few minutes and lying down on my front I can't lift my head without my lower back burning. Do you have experience with Endometriosis? xxx

[Leniko in reply to redthedog85]

That is awful. I wonder if a neurologist should be consulted to see if it’s inflamed nerves? It sounds like you are really suffering.

[Hidden]

Hi, I am sorry you are having to go through all of this pain.

I had a horrible period back in July. Huge blood clots, very painful, extremely heavy and it was relentless. My GP prescribed me Norethisterone which stopped the period and she also got me straight in for an ultrasound scan. It revealed a huge ovarian cyst, so I was then offered an MRI scan. My CA125 was only 13, but because the cyst is so large (20cm), Gynaecology wanted a closer look of what was going on.

The MRI picked up endometriosis. I have no symptoms of it and it wasn't visible on my ultrasound scan. I really think you need to push for an MRI, because there is obviously something going on to be causing all the pelvic pain.

I wish you all the best x

[redthedog85 in reply to Hidden]

Hi Jencs! 😊

Thanks for you reply. I think you're right about an MRI. I'm happy to hear a story where a gp didn't need pushing to get the the bottom of something ❤ didngou have treatment for your endo? xxx

[Hidden in reply to redthedog85]

I was so lucky when I called my GP surgery, as the receptionist deliberately put me with a GP who specialises in Gynaecological health. They are also female which I think helps too!

As for Endo treatment, I think at this stage that my gynaecologist is focusing more on removing my cyst at present, because it is so large.

Sorry I can't help you more at this stage, but as soon as I know more, I'll let you know my experiences.

A little advice for you if you go back to your GP - ask if there is a doctor there who deals with women's health. I think they'd take you more seriously. Just because you are female, that doesn't mean you should be in pain every day x

[redthedog85 in reply to Hidden]

Your gps sound great!! I'm registering with a new gp tomorrow. Mine sent me a message telling me I was unregistered with them. No reason or explanation. In the middle of all this 🙄🙄 I've never openly complained about any of this to them. Let's see how I get on with new doctors.

Are you booked to have the cyst removed? xxx

[Hidden in reply to redthedog85]

That's very strange that your current gp surgery think you are unregistered, but it sounds like a good excuse to register with a new one. A change is as good as a rest as they say! 😊

I've got an appointment with the surgeon on the 23rd to see what they want to do about the cyst. I'm overweight, so they'll probably want me to lose weight first 😂

Fingers crossed for you though. This pain you are in must get you down so much. Keep us all posted on your journey, yeah? x

[redthedog85 in reply to Hidden]

Good luck for the 23rd! ❤❤ I hope they just go ahead with it and don't make you wait around 🤞🏻

It is getting me down a tad now, I tried to explain that to the Gynaecologist when he was happy to do nothing 🙄 I will let you know what happens next 😊😊 xxx

[redthedog85]

Hi again ladies 😁😁

So I'm not much further forward with things but things have changed a little bit and I wondered if anyone had any input for me. The pelvic pain is very much still there. I've been noticing changes in the frequency and urgency of needing a pee. On Wednesday morning I felt like I had the start of a UTI, something I've had plenty times before. But it has felt a bit different to a normal one I've had before. Usually I will feel the need to pee constantly during a UTI and when I go there'll just be a tiny amount and a lot of stinging. I can usually always hold it. But now I am feeling the need to pee constantly but when I go there is a bladder full every time and sometimes a slight sting but not much. I can go within 15 minutes of just going and have a seemingly full bladder again. And as soon as I get the urge I can't hold it at all. I'm only 38 and have never had issues with bladder leaking. There have been a couple of tiny clots when I've gone and there is a definitely pink tinge to it now. I have been to the pharmacy and she tested a sample of my pee and there was no sign of infection so I wasn't given anything for it.

I have had a Cystoscopy recently and scans of my bladder and kidneys and there was no sign of anything wrong with them.

Anyone experienced any of this before?