I'm fed up of feeling scared about gynaecological issues!

[Jencs1983]

Hi everyone,

I hope you are all well. I think I'm okay, but I just need someone to talk to about my health, as I'm driving my friends and family mad due to some gynae issues I've been suffering with since at least last July - I swear that they all think I'm overreacting and so I am feeling quite alone now.

I've posted here a few times about a very large ovarian cyst that I have - my last ultrasound scan shows that it is 17cm x 10 x 14. I had an MRI back in September too and there is evidence to suggest that I have endometriosis that appears to be connecting my bowel and uterus together.

I had a CA125 test in August that came back as 13, and I had some other blood tests (I think some were other tumour markers, full blood count and kidney function) which came back fine.

I had at one point convinced myself that I have cancer, but I got told that although the cyst is large, it looks simple in nature and the fact that the blood tests came back normal was reassuring apparently, so that eased my worries a little.

Fast forward to this week, I had my first ever appointment at my local endometriosis clinic. The consultant I saw was very nice, but she didn't actually want to discuss the endometriosis, just my absent periods (I'm 40 if this helps).

The clinic was running late so she was rushing a bit, but I had hoped that we'd be discussing surgery to remove the cyst, but instead, she just wants repeat blood tests, (including tests that I've not had before: ca19-9 and CEA), I am to have a hysteroscopy and endometrium biopsy, and I am going to have another MRI scan.

Following this appointment, I am now really worried and upset again, because it just seems to me like the consultant thinks I've got some kind of gynaecological cancer. I am also waking up every morning with a dull stomach pain, I look pregnant even though I'm not and I get back pain when I walk. I can't sleep for worrying and I'm on 'Dr Google' constantly!

I don't really know what I want from posting this either? Maybe I'm just after a hand hold, because I am feeling very alone at the minute.

I probably sound ungrateful too, because I'm moaning about all these tests I'm receiving and I'm fully aware that some women don't get offered any tests at all, even though they really want them. It's not that I don't want these tests, but I am so scared of receiving the results that I even wish that I'd not gone to my GP last year at all. For me, ignorance really is bliss!

I'm sorry for the long post, but I've got so much to say and not really anyone to say it to!

Thanks in advance for any replies. I am extremely grateful to hear from you x

I hear you x

Thanks for your reply. It means a lot and I don't feel so alone now x

I don't think that's the case. When I got referred to an endometriosis clinic they repeated all the tests I had done already plus more including MRI. Then they discussed my case at a MDT meeting and decided what surgery I need. It took a few months. If they thought you have cancer they would refer you to a gynae oncologist and you would be on the 2 week pathway. This happened to me 2 years ago and everything happened quickly. They didn't see any signs of cancer.

I'm actually having my surgery tomorrow and it has taken nearly 2 years to get to this point (I also have a large cyst).

Thank you so much for your reply.

Wow, you have been through so much. How did you cope with the worry?

I know I'm probably overreacting. I've always been bad at dealing with blood test results and stuff. But it sounds to me that the endo clinics like to get as much info on new patients as they can, judging by what you've said? That makes a lot of sense.

I wish you all the best for your surgery tomorrow and I am so grateful to you for you sharing your story.

I hope you have a speedy recovery x

@Jencs1983 I'm sorry it has been so frustrating and your worry is totally understandable- it's so frustrating that it's an area where women get fobbed off left right and centre which makes you start questioning everything until you eventually genuinely start thinking you are making it up!

It's great news that you are finally being seen by an endo specialist. Is it through the NHS? If so you might need to prepare yourself for a long wait- they will get there but the waiting lists are brutal. For what it's worth, i think the retesting of everything is standard. When my Gp first referred me she actually referred me for a whole battery of tests at the same time- she said it's the first thing they will want to do, and luckily she saved me a good bit of time because it meant i had just had all of the blood tests etc by the time my appointment rolled around.

My first appointment with an endo specialist was in august 2021 (they were useless and just gave me the coil and then no follow up, despite having been going to the gp with symptoms since 2012). I then moved so was rereferred to a different hospital and the doc I spoke to was great- he basically said you've been suffering for years, youve tried all the usual stuff, your quality of life is clearly suffering, and put me straight on the list for a laparoscopy. That was nearly a year ago- I finally have my surgery coming up next month!

Stick with it and keep pushing them, don't let them fob you off, familiarise yourself with the NICE guidelines in case you get someone who doesn't know what they are talking about. Good luck x

@damageinprogress To be fair, when I went to my GP about an awful, heavy prolonged period I was having last July, she organised an ultrasound scan and a referral to Gynaecology straight away. And as soon as my ovarian cyst was discovered on the scan, my GP arranged the CA125 test for me and an MRI scan.

It all happened pretty quickly and I knew I was lucky in that respect - so many women who have symptoms just get fobbed off, but I never was (everything has been NHS for me).

I feel a bit of a fraud if I'm honest, because I don't have any pain really. I was so shocked to hear that my MRI scan revealed suspected endometriosis, because I literally have no symptoms of it, but that's because of irregular periods maybe.

I am prepared for a long wait, and as I'm not in pain, that's not a huge issue for me, but as soon as a doctor gets me to have blood tests, it's like I just don't know how to cope. You'd think I'd be used to blood tests too, because I've been a type 1 Diabetic since 1998!

Anyway, thank you so much for your reply. I am so grateful to you for sharing your story with me.

How are you feeling now? x

@Jencs1983 I think it's great that your doc moved so quickly, hopefully it's a sign that awareness is gradually going in the right direction. The process is slow, but hopefully the blood tests will be able to give you a bit of reassurance that nothing more sinister is going on.

I am feeling ok, thanks for asking! I am luckier than many in that my pain isn't debilitating (I do think the coil has helped!) but I do have some degree of pelvic pain and sharp pains in my ovary region about 75-80% of the time - it just gets exhausting. I also have never had anything show up on any scan so whilst I've been told endometriosis is likely, I don't actually know! I feel relieved that I am finally having a laparoscopy to get some more definitive answers, but I am also pretty terrified that I will wake up and they will say "nope, everything was clear, off you go" and I will still have all of the symptoms but no answers. Currently I swing between "they are 100% going to find endo or scar tissue because I can literally feel it pulling and dragging when I move" and "they have never managed to find any physical evidence that some thing is wrong so this won't be any different". I'm very worried about how I will cope with the psychological impact of that but I am trying to not think about that and cross that bridge when it comes to it :)

I really hope they get you in for surgery sooner rather than later, it's so annoying that they can see that you have this cyst and know it's causing you problems and won't just whip it out!!!

@damageinprogress It must be so horrible being in pain nearly all of the time. This is why I feel like a fraud, because I've clearly got something going on down there, but I'm not in any pain really. I feel like my appointments could be given to more worthy women, if that makes sense?

I was very lucky to be matched with a GP who specialises in gynaecology upon my first phone call to my surgery. She made sure not to waste any time, and offer me most of the tests straight away, and not fob me off with IBS or many of the other conditions that women get told.

Do they think that you have endo because of the pain you are in? The only reason they think I might have endo is because evidence of it showed up on the MRI. It is attached to my bowel and uterus, but I was shocked to hear this, because aside from a couple of heavy periods, I have zero symptoms of it!

It's so sad to hear you say that you hope that they find something during your laparoscopy, but I totally get it, since you must be so fed up of the horrible symptoms. At least if they find something, they can form a treatment plan for you, and hopefully make you better.

I feel so awful for moaning on here. I've got it good compared to so many of you.

You have really put things in perspective for me.

@Jencs1983 I have had the same feelings as you. There are women who are bedbound for several days a month, or on prescription painkillers that still don't touch the pain, or present to a&e regularly because their pain is so bad. And whilst I 100% think they should be treated as a matter of urgency, I also know, aside from my physical symptoms, the impact that the worry of not being fully sure what's going on has had on my mental health. It's awful to feel anxious and it's unnecessary- we shouldn't be in a situation where you have blood tests and then an appointment and then she didn't even discuss what you went into discuss and just referred you for more tests and didn't fully explain why, thereby causing you further worry.

And nobody should ever have to feel that timely and appropriate medical treatment is something you have to be "worthy" of. And you shouldn't have to feel lucky that you got a doc who has a clue, all of that should be standard- so in summary, you absolutely are worthy of the tests and treatment and I really hope you get sorted soon and that you don't have to feel anxious for much longer ❤️

Sorry, as you can tell I am quite passionate about this 😂

And also to add, it's a relief that you don't have symptoms but that doesn't mean it couldn't progress, and if they know it's there then they absolutely should be trying to get it sorted before it impacts you further! Xxx

@damageinprogress There's nothing wrong in feeling passionate about this subject. I do too to be honest, but I've been driving everyone mad about it here 😂

It's good to talk to women who are going through similar issues, and although I was apprehensive about posting here again, I am very glad I did now.

Much like you, this has taken its toll mentally on me more than anything else. I can handle the needles used to derive blood. The hysteroscopy doesn't scare me, or the general anaesthetic, or anything else related to operations. It's the results of it all and the time it takes that I find most bothersome.

I should have realised that my first appointment at the endo clinic would have been more tests, rather than just discussing surgery.

I know deep down that I'm a worthy cause to get all of this sorted out, as it has been on my mind that although I'm not in pain now, it doesn't mean to say that I won't be when this issue progresses.

Fingers crossed for each other! 🤞

@Jencs1983 I know what you mean, I feel that even if they can't do a lot about it I will feel a huge sense of relief if I get some definitive answers, the mental toll is very hard to explain! Hoping you get test results soon and that all goes well for you too x

Follow up bloods for c125 , cea and c199 after ultrasound, very worried , c section last year and nothing showed up and scan last year only showed a cyst and fibroids , anyone been through similar please

I've had two ultrasound scans and an MRI. The ultrasound showed a very big ovarian cyst that looks benign in nature.

MRI scan showed up Endometriosis that has attached to the bowel.

I've had all the blood tests twice that you have had too - they were all within normal limits.

My gynae seems to want to explore the thickened endometrial tissue and do a biopsy, done through a procedure called a Hysteroscopy which I'm dreading, but it has to be done. They are trying to rule out cancer. I am very worried right now.

My sister in law has fibroids and has recently had a womb biopsy. If there's no cancer, they will do a full hysterectomy on her. She is 47. I hope this helps and I hope you are feeling well.

Gynae issues are horrible.

Thank you for replying, are these blood tests quite routine ? I haven’t got a follow up appointment until 3 weeks, obviously hoping that is an indication of not being an emergency but who knows

Surely if they were really worried about cancer OP they'd have had you in a lot sooner, on the 2 week pathway. I'm sure these tests are more to get a clearer picture of exactly what is going on.

I believe they are routine, because every follow up appointment I've had with my gynae, they seem to want to do the same blood tests time and time again, even though they come back normal. I guess they're trying to keep an eye on me.

If you are anything like me, these blood tests are probably worrying you. I can't help with your worry unfortunately, but I can share my experience with you if you need a chat with someone who understands how you are feeling.

I don't think they're that worried, but I am naturally a worrier.

Thanks for your reply.

Hi all

thank you for replies, so nice to talk to people that understand

how long did you have to wait for ultrasound results ? They don’t say anything at the appointment which drives me mad because your trying to guess at their facial expressions

my c125 was 49 so that’s what they are looking to investigate as to why , but they said it could be the cyst or fibroids

My first ultrasound scan was a positive experience for me, as the lady told me straight away that I had a very large ovarian cyst that looked simple in nature.

My second scan wasn't as good - the lady was very rough with me and said nothing, but I already knew what was there anyway.

When did you have your scan and are you in England? Your results might be on the NHS app. My second scan results showed up on the NHS app the following day.

As for your 125 result, it is raised in many conditions, most of them benign, but the doctors are right to investigate.

I know that this is a very worrying time for you.