Endo advice

[budgie12]

Hey I am new to this forum.

I could do with some advice. I have not been diagnosed with endo as of yet. I am currently waiting for an ultra sound. I have done some research and think that this is what i might have due to some of the symptoms I get. I would like to know what sort of symptoms others suffer with to see if there are any similarities.

Just before my period the pain is at its worst. My stomach is hard and bloated and I have a dull ache that runs across my lower back. The pain sometimes goes to the tops of my legs. It feels like there is a pressure pressing down from under my diaphragm as well. I have also developed hip pain and pains in my right shoulder. I have muscle aches and days where I am so fatigued I have to leave to work as I cant stay awake. Migraines are regular too. I get awful depression and really bad dark thoughts. Last month it felt like I had only one week where I felt reasonably normal and the cycle started again. I first thought it might be PMDD but I am not so sure. I would appreciate any advice.

[Moon_maiden]

HiDon’t be disappointed if endo doesn’t show on an ultrasound, it rarely does unless the person doing it is very experienced. I didn’t have it show much on any scan. At least it can rule out other conditions.

Have you had a referral to gynae?

Has GP given you decent pain relief?

[budgie12 in reply to Moon_maiden]

I was referred to a gynaecologist in January and on a waiting list for an ultrasound.

At the moment i am just taking ibuprofen and paracetamol. Not been prescribed anything for the pain.

[Moon_maiden in reply to budgie12]

At least you have a referral, when appointment comes through it’s possible to check on cancellations. Also for ultrasound, MRI would be better. You can also check it’s been received.

If you feel this pain killers aren’t working do see your GP. Naproxen is a stronger version of ibuprofen, Nefopam is non opiate, and you have opiate based such as codeine. Ask for a pain clinic referral. The pain nurse put me on Tramadol, consultant added Amitriptyline and now Pregabalin, both are for nerve pain. You shouldn’t have to suffer.

[budgie12 in reply to Moon_maiden]

Thank you so much for your advice. I will certainly look into a pain clinic referral.

[Endostage2]

Oh definitely get a laparoscopy. I got so many scans and dr appointments and there was nothing that was coming up but had symptoms that were slowly getting worse. Went to a gyno and they said yeah nothing is showing in scans but not going to know fully till get a laparoscopy.

If I didn’t just get really over feeling unwell all the time and having to deal with pain I would never have gone through with it and found out that I had stage 2 endo but a lot of it in pelvic region.

Was so vindicated afterward, like I was not overreacting or anything which some drs made me feel. I had got really depressed, like I never thought I would. Was just physically and emotionally done. My symptoms had definitely got worse in terms of tiredness, muscle aches, nausea sometimes, pain with sex, pain during periods, pain not during periods, pain that radiates to lower back, brain fog, severe constipation...to the point my nervous system could not handle it anymore and now either separately or because of chronic issue may have Pots. So not fun but so glad I just pushed it and didn’t just give in to meds and diet and whatever else I was told to do instead.

You know your body better than anyone, keep fighting for it, because no one else will and it’s unbelievably worth it on so many levels.

I am currently on low dose amitriptyline by gyno for nervous system (and panadol when needed) aches and pains and had the Mirena inserted during surgery as it’s apparently easier to put in and very good at keep endo at bay. 3 weeks since my surgery and still feeling a bit of everything but definitely not as bad. Takes time for it all to heal and hormones to re-adjust. See how mirena goes for a few months and checking soon if mirena is still in place with a scan.

Good luck! And sorry for the rant

[budgie12 in reply to Endostage2]

Thanks so much for the advice. Dont worry about having a rant. Its good to hear someone elses experience and to know that I am not on my own. I am currently on a waiting list for an ultrasound at the moment. With covid appointments are taking their time to come through. I am currently on sertraline to help with the emotional effects my periods give me. I am glad that you pushed for your treatment and things are a bit better for you now. You have shown strength and thats a massive positive.

[Endostage2 in reply to budgie12]

Let us know how you go! It’s tough but we are here for you. We understand how crap the process is, and can give each other any tips we find. Good luck and keep fighting the good fight. I know its lame, but sometimes good to hear- you are always worth fighting for a healthier and happier you.

[budgie12 in reply to Endostage2]

Thank you. I really hope the ultrasound comes through soon so I can get the ball rolling. My stomach and pelvic area feel like its being pulled apart every day and making me so unhappy. Thanks for your kind words and of course I will keep you posted.