Help. New here

[Leahgal]

Hello. I am new here and feeling pretty scared tbh. I am 42 and have been experiencing gynae issues on and off for the past 4 years since an abnormal smear, leading to CIN 3 cell changes and a Lettz procedure. Most recent since September with heavy bleeding, pelvic pain, back pain, heavy periods and now bleeding with sex. No cell changes this time. Out of the blue, pelvic ultrasound showing fluid in the fallopian tubes, cysts and other complications which they think is endo. Waiting to see the Endo specialist and in the meantime, GP unable to help. Is there anything I can do to help with symptoms? Thank you in advance of you can help.

[BloomingMarvellous]

Hi Leahgal

Welcome 🤗 and hope you find this place a comforting resource. The panic and worry is very understandable when a whole other world possibly yawns before you. There will be a slew of information and terms that will probably feel overwhelming and just a lot to take on. Giving yourself time to talk , ask , come to terms with all or any is the kindest thing you can do. Whatever you choose treatment wise I’d really suggest you have someone who can support and be with you during appts. It’s all too easy to go into a funk and not know what was said or not ask your burning questions because it’s all a bit much.

A few tips are to ensure any surgery is done via a BSGCE centre by a specialist in endometriosis surgeon rather than a gynaecologist. Treatment to remove the endo, if that’s what it is , ought to be by excision not ablation and the surgeon may require other specialists help during surgery if it has spread to other areas such as a bowel surgeon. This is not unusual so try not to be alarmed by this.

Make sure your surgeons are the best you can find locally to you Endometriosis UK have local support groups that might be able to help out here if you have one nearby. Lindle on this forum has an FB resource for information and recommendations so link up with her and DM her for the links.

Ensure the medics answer your questions fully. It is worth asking them whether they are also considering Adenomyosis ( a related issue that can cause endo like issues within the womb wall - it can cause heavy bleeding and cramping ) and ask what treatments they would recommend if they do. You may need to give permission beforehand for those to take place and save yourself additional later surgery. An MRI may be helpful in showing this up as a likelihood but isn’t definitive ! Ensuring the radiographer is fully trained to read endo and adenomyosis on the scans - it’s a separate training and art form. Plenty of us who have endo also have the ugly sister adenomyosis so it’s a common enough pairing. They don’t know a whole bunch about the latter it’s more poorly understood than endo even is which is pretty thin on the ground.

Protect yourself , be kind to yourself if it is endometriosis it’s an issue that’s been with you without you being fully aware of what box to put it in and will be for the long haul . That’s not meant to scare you but to say you have some time to find out for yourself what best works for you. Trust yourself and your gut feelings. Don’t be misled by those who claim they can “ cure “ it . What is out there is management of the condition not cures. Some things make radical swift changes, some more quiet slow improvements , some bear more risk than others. Some will work for you , some really won’t and some it will be hard to call. Research and support yourself in ways you can realistically manage. My favourite resource is Heal Endo by Katie Edmonds available online and Amazon .

Keep coming back here and asking for what you need and never be alone with the muddle and processes. It can be a tough place and fellow travelers are the best ♥️

[Leahgal in reply to BloomingMarvellous]

Thank you so much for your reply and some great advice. I am making notes, listening to the advice and thankfully have an appt on a specialist Endo clinic in January so will be asking a list of questions. Thank you so much. Xx

[Leahgal in reply to Leahgal]

Hi. Did I see on another post that you used to work as a nutritionalist? I am allergic to fish so cannot take a fish oil supplement which some feel helps Endo. Is there an alternative I can take ? Thank you for any advice. X

[Leahgal in reply to BloomingMarvellous]

Hi. Did I see on another post that you used to work as a nutritionalist? I am allergic to fish so cannot take a fish oil supplement which some feel helps Endo. Is there an alternative I can take ? Thank you for any advice. X

[Moon_maiden]

Hi

I understand how it feels getting older and having Endo diagnosed, I was 51. Not sure what symptoms you need help with but GP can easily supply pain relief. I’ve tried most things, Tramadol was ok, Nefopam if you want to avoid opiates. I use Diclofenac suppositories and/or Oramorph when it kicks up a gear and paracetamol and Duloxitine on a daily basis. Heat works well.

I hope you aren’t waiting too long, let them know if you can do cancellations, can speed things up sometimes.

Please ask anything.

[Leahgal in reply to Moon_maiden]

Thank you so much for your reply. Sadly me experience at the moment is the GP is giving me no treatment at all. Instead they keep saying wait for gynae. Really frustrated and have started to find my own solutions which I hope may help. Main issue is bleeding which is affecting me at work and with my partner. Really wish I could stop that! Thank you for your advice and kind words. Xx

[Moon_maiden in reply to Leahgal]

Don’t let GP fob you off they can try different things. See a different GP. Using the econsult form works well on their website, keep it all in writing. Tell them what you want don’t ask, these days it’s too easy for them to say no.

Hope you find some solutions 🤞

[BoobleDooble]

I've always joked that ibuprofen is god's gift to women. It is the only thing that worked for me and it worked wonders. In fact when I had surgery (and they found massive amounts of endometriosis I didn't even know I had) I told my doctor I'm not keen on having opiates so she filled my post surgery pain killer IV bag with ibuprofen instead of morphine.

[Leahgal in reply to BoobleDooble]

Thank you so much for your advice. I have found ibuprofen works for me too so far. My main issue is the bleeding and how much it wipes me out. Hoping they can stop it. Xx

[Sunset-lady]

Great advice here already. I was 50 when I found out I had endo. I would recommend giving up alcohol. It's the single best thing I did to help mine. Perhaps do it after Christmas. If you observe your symptoms through an alcohol lense it's really interesting. Also second Heal Endo book x

[Leahgal in reply to Sunset-lady]

Thank you so much for the advice and I will check out the book. Xx