Don’t know what to believe/think

[PinkPink29]

Hi all. I’ve been having painful periods for about six months now, the type of pain that stops you from getting on with daily life. This forum has been a great source of advice and comfort to me as I come to terms with what’s potentially wrong. Before this I’ve never had any symptoms of endometriosis other than periods being a little heavy. In the last six months I’ve started getting nearly all of them! Im 38.

Can endometriosis symptoms come on as quickly as that? Every month there’s something worse and it filters into more of the month than just the start of my period. I’m concerned it’s something more sinister/serious. (I know endometriosis is serious but hopefully you know what I mean by that)

I’ve had an ultrasound that found a polyp, so wondered if it could be that? But gynaecologist says they don’t cause pain.

Also the hospital I’ve been referred to is not BSGE but my consultant says that does not matter for a small amount of endometriosis (they’d treat there and then) and I’d be referred if severe is found. (I am on the list for diagnostic laparoscopy) those of you that have been through this process would you be happy with this?

Has anyone been treated in Bristol that may be able to give more info about their experiences, away from this thread if necessary?

I guess I’m just seeking reassurance, as nobody I know has gone through this at all.

Thank you so much.

[MarielEnd]

Sorry to hear you’re experiencing so much pain. I’m pretty new to this forum as well. I very much recognize your story. I’m 35 and my periods are also getting more and more painful, including ovulation. Last few months the pains and symptoms are progressing so quickly, it’s making me crazy! I’ve recently been diagnosed with Adenomyosis (have you read about it? Perhaps it’s an explanation for your symptoms). Awaiting a MRI for possible endometriosis. I did go straight to an endometriosis specialised clinic, as it can be harder to diagnose for gyneacologists who are’nt specialised in endo. Also I thought polyps could cause pain? But I don’t know for sure.

Good luck with your search, I hope you’ll get answers and relief soon...

[PinkPink29 in reply to MarielEnd]

Thank you for your reply. I’m so sorry that you are also getting more pain and that the symptoms are also progressing quickly. It’s so hard isn’t it. My life now revolves around the extreme changes through my cycle which is such a lifestyle shift for me. Sorry to hear you have adenomyosis too. Does it feel a relief in a way to have it named? I feel in limbo right now. The gynocologist said that my scan showed no sign of adenomyosis so he felt it was unlikely but who knows.

I wish I had insisted on being referred to a certain place now but at the time I hadn’t researched it enough. I have the option to transfer but risk much longer waiting times. Are you waiting for any treatment?

I also thought that polyps could cause pain until the gynocologist told me at my appt today they don’t. There’s so much conflicting information.

Wishing you the best of luck with your journey too and thanks again.

[MarielEnd in reply to PinkPink29]

Thank you! Indeed there’s much conflicting information or just absence of knowledge. This forum contains so much worthy experiences and answers that even some doc’s can’t tell you. I did gave relief to know I have adenomyosis although I also have symptoms that are more likely endo so it would be even more good to know for sure if its endo or not. We’ll discuss treatment when the MRI results are in. They did strongly advice me to start the endo (or low FODMAP) diet. I’ve tried coils and the pill to which I don’t respond well (hormones make me go crazy) so my own plan is to begin with trying the diet and acupuncture... I had acupuncture a few years ago for hormonal imbalance and it did wonders! Maybe if you end up deciding to transfer you can try the diet and acupuncture while you’re waiting?

[PinkPink29 in reply to MarielEnd]

I am exactly the same with hormones, I have to be so careful to keep my emotions balanced. Funnily enough I’ve just started acupuncture. I’m very practical in how I approach things. I see a problem and then I put work into getting a solution. So I know I will try everything I can to sort this out. However I know that it’s not as easy as that with endometriosis which is frustrating to say the least! It’s too early for me to say if the acupuncture has or will make a difference for me but reassuring to read that you had good results with it! Best of luck with the results of your MRI and treatment moving forward.

[Vixen725]

Have you spoken to a dietitian about changing your diet? I find that I have more pain based on what I eat. I try to eat a lot of fruit and vegetables. I also eat lean meats but I do eat beef either right before or after my period because it usually makes me anemic so I do pay attention to that. I stopped eating dairy, like none! Cheese was the hardest to give up at first and now dairy turns me off, I don't want it at all. I also am as gluten free as possible. I don't take any caffeine whatsoever and I limit my sugar intake because sugar feeds inflammation! I don't do anything that I think will irritate my endometriosis in any way. Before my period starts I eat light, like soup or something easy to digest. Consider changing your diet as a way to start with your pain management. A little about me, I had stage 4 endo before my last surgery. They found it growing in my lung cavity 4 years ago. I hope this helps you. Good luck and be blessed

[PinkPink29 in reply to Vixen725]

Hi Vixen, thank you so much for your reply. I haven’t seen a dietician but I have started reading about my diet and food that makes a difference. I am vegetarian and have been all my life, so anaemia is common for me but I do eat a lot of fruit and vegetables. Giving up or cutting down on dairy is something I have read about, but it’s going to be such a challenge for me and actually upsets me because I love all things dairy! But my aim is to try and experiment with other options and see if that makes a difference. Thank you for the advice. Knowing that this helped you definitely gives me the push/confidence to keep trying to change my diet as challenging as I know that will be for me. Xx