feeling deflated

[LucyC30]

Hi all, I recently posted regarding new pains, and have undergone an ultra sound which only found a small cyst, blood tests including a ca-125 which was slightly raised.

I was put on an urgent cancer pathway for ovarian cancer, and saw a gynaecologist today. He basically ignored all I had to say and wants me to go on the pill. He said I do not have endo, and do not have cancer I am too young. He didn’t even look at my scan as it wouldn’t load on the system, nor investigated further. I walked out crying.

There has still been no explanation for my pains in my right ovary, hip and back. I am at a loss at what to do now.

I am going to try for a second opinion or should I just pay and go private. I am so upset today and it was a complete waste of time.

[Archi_]

Hi Lucy,

I’m so sorry you’ve gone through this. First of all you are not too young to have any of the illnesses you have said. The gynae also cannot conclude you do not have endo from just an ultrasound and blood tests. An ultrasound absolutely can miss endo, and it also depends on the radiologist’s experience to look for it even in an MRI.

I have had many a similar experience with my own pelvic pain, I went to the GP for help so many times and they sent me for blood tests and ultrasound scans that came back normal other than showed I had ‘functional cysts’ and I was told that I obviously just had a low pain threshold and anxiety/depression. This was me for 10 years because I did not know what endo was or how to get someone to believe me!

It wasn’t until I said I was trying to get pregnant (and hadn’t conceived after two years because one GP told me I was young and had plenty of time so don’t stress and it will happen 🙄) that I was listened to about my pain and referred to an NHS fertility clinic who’s gynae has now referred me for a diagnostic laparoscopy. I would 100% push for a second opinion on the NHS (which you are entitled to) but also push for an MRI. An MRI might show nothing but on mine it showed 4 hemorrhagic cysts and pelvic adhesions which had never shown up in any of my 4 ultrasound tests before. Please be aware that a clear MRI is still not conclusive of no endo. The gold standard to diagnosis is a diagnostic laparoscopy with biopsy to test for endo.

To be completely transparent I have ended up going private because I could no longer deal with the NHS waitlist times and the pain. It was through my private health that I had the MRI and I am now waiting for a laparoscopy to treat the suspected endometriosis. For me, going private meant that I could ensure my gyno was an endo specialist and get seen quicker but it can be a large financial burden if you don’t already have private health insurance, so please still do push for the 2nd opinion with the NHS whilst you decide to go private or not.

Ask for a second opinion, go with a notebook of your symptoms, test results and ask for an MRI. Endometriosis UK also have a nurse helpline that can help you to know how to advocate for yourself during an appointment, I highly recommend contacting them.

I know this is a horrible feeling, you are not alone, and you can and will push for better treatment!

[LucyC30 in reply to Archi_]

Thank you for your reply, I am crying reading it. I had hoped today I would have been granted the MRI but like you was robbed of even being given the option of this.

I am going to do what you’ve suggested and waiting to speak to my GP for a second opinion / referral and have been in talks with a private clinic. But like you I think will be left with no choice but to go down this route.

I have never felt so broken as a female. I had felt listened to, right up until I met with this gynaecologist. I had all of my notes and pain diary with me, he didn’t even let me speak about it , no where even near!

I am sorry you have gone through the same.

Thank you for taking the time to reply to me, Lucy x

[Archi_ in reply to LucyC30]

I am so sorry this has happened to you, and that you were treated in such a truly shocking manner- You did all the right things. Your pain and your feelings are completely real and valid and we all believe you because sadly the majority of us are/were in this position.

Please do tell your GP about this experience and they may be able to refer you to a different hospital, but the Endometriosis UK helpline will be able to give you better advice on this than me. Whilst you look for private clinics try to find BSGE accredited centres if you can, or gynaes that are specialised in ovarian cancer and endometriosis.

Whilst I know how defeated you are feeling right now, please please know that this forum has such a wealth of women who will back you up and support you, and advocate for women’s health to make sure the women after us never have to experience this.

My inbox is always open if you need to vent or want to share your next steps!

[RedCat24]

If you have PALS situated in your hospital (or similar) please give them a call and tell them of your experience, they can then help in getting you a second opinion/complaint on this gynae who hasn't listened you. I'm so sorry you had to deal with this 😔 it's so deflating when we are shut down and not listened to by anyone who doesn't know our own body's other than us x

[LucyC30 in reply to RedCat24]

Thank you I have tried to contact pals am still awaiting a reply. But am in the process of getting a second referral x

[RedCat24 in reply to LucyC30]

Good luck with the second referral, PALS can take a while I emailed and called up after a week to get it quicker sorted x

[zdl123]

Hi Lucy

I am so sorry you've had to go through this. It's awful when you're being dismissed by those you expect to understand and help you.

I've had symptoms similar to yours (ovary pain and raised CA-125 amongst other things) for 17 years (I'm 33). I was eventually offered an ultrasound (in 2024) which showed a 6.5cm cyst on my right ovary but no endometriosis. I was also offered an MRI which I took - it showed the cyst but the MRI tech noted that they felt there was "no evidence for scale of medical complaint." i.e. "This woman is whining over nothing and doesn't have endometriosis or any other significant issue."

Luckily for me, I was then under a consultant who took me seriously and he offered me a laproscopy anyway, which I had at the end of February this year.

The result was stage 4 endometriosis on multiple organs which requires specialist removal by another hospital, so as of now, I still have a large cyst and extensive endometriosis tissue inside me.

I don't say any of this to worry you, just more to illustrate that scans - even MRI scans - can miss extensive endometriosis. It has taken me 17 years to get this diagnosis and I've been in front of a lot of doctors and consultants who have dismissed me the way they've dismissed you. I've also left many doctor's/hospital appointments in tears, so I totally empathise with how you feel 🫂

Get a second opinion and don't stop advocating for yourself. You deserve a proper investigation not just an assertion based on ignorant assumptions.

Keep talking as well, this is a great forum that's helped me so much already. You can also reach out to Endometriosis UK via their web chat. They also have some great resources and information on their website.

You might also want to consider taking a friend or family member to your next medical appointment? Sometimes it can help to have someone in your corner.

Take care and best of luck x

[Selfel in reply to zdl123]

Just to add, that it is not necessarily the MRI that misses it. It is often the skill set of the person reading the scans. I was lucky my scan went to an mdt meeting where a specialist read my scans.

[zdl123 in reply to Selfel]

Ah ok, thanks for that. I hadn't realised

[LucyC30 in reply to zdl123]

Thank you for your reply, it is extremely helpful. It’s so upsetting that so many of us have to go through with this, and we only have our voice to fight for ourselves. And it’s continuous every single time I see another doctor. That itself is so emotionally draining. I really hope a second referral will be better than the first. Wishing you well x

[Rookery17]

HiThat is awful please get a second opinion to dismiss you and say your too young is ridiculous! That's awful that's happened to you it's worrying and to be told jus go on the pill would just be masking potentially something.

If you were referred for your ca125 that is a marker test and if it's above a number then yes you should be referred for MRI scan when I had this test I was on a urgent 2 week referral I do have endometriosis which normally makes the the blood test higher but I still had to go have an MRI to make sure nothing sinister even though I had a laparoscopy 2 weeks previous. Defo go back and demand a scan or speak to your gp or for a another referral shouldn't be put in this position and it's sad you have to fight for it but make sure you do good luck

[LucyC30 in reply to Rookery17]

Thank you for your reply and making me feel less stupid, I felt so alone in that moment but knowing I’m not making a fuss and what happened wasn’t ok makes it some what easier to deal with and how important it is to speak out. The gp I saw didn’t really say much in response to what happened and has stated she can’t guarantee they won’t say the same thing on a second referral but hopefully will be under a hospital of my choice so am going to do some research. But thank you for making me aware to fight for the MRI even as just the next step as I completely agree I’m not sure how they can rule anything out by just stating ‘I’m too young’. Thank you for reaching out I appreciate it xx

[Rookery17 in reply to LucyC30]

Should never be made to feel stupid or unheard that's why Soo many woman have been struggled because of being dismissed i was just told I was unfortunate that I had painfull periods. It wasn't till I went private and paid for a fertility test that I got diagnosed as he was also a Endo specialist so yea all those years I had Endo and only got diagnosed 3 years with stage 4. But I really do hope you get heard this time be persistent. Defo should be offered MRI I've had 2 then went on for laposcopy No problem good luck 🤞 xx

[LucyC30]

Incase anyone sees this thank you for all the replies and advice I have had my second referral and it is lucky that i did! Having a second internal ultrasound there are signs of endo / adenomyosis so I am now onto my next steps of an MRI to access the degree. This explains all of my pain that has been constant for 8 weeks now.

Thank you all for reminding me to fight and have a voice! I know my journey is only just beginning and so many of you have been on this ride for a very long time, I am grateful we have each other to lean on and learn knowledge from. So thank you. Lucy