came off all hormones completely?

[Ginge2001]

Hi I have woken up in unbareable pain this morning and I have been taken off zoladex at the start of the month, and my body has been having hormones in since April 2023 and now I have nothing at all. The gyni said she was going to put me in for a MRI as the pain is in is always the same and it never has calmed down, and that I done 3 months on zoladex and was very bad bleeding since the 1st injection. I was supposed to be getting another injection to see if that helps, but I have had no more information on what or when that will be. The gyni also said she doesn’t want to put a coil in because she doesn’t think that would help as I have tried a lot of different hormonal treatment. And I’m waiting on a referral for a specialist because she doesn’t understand why I’m always in so much pain and never have done days worse than others. So now until that happens I’m on ibuprofen. I feel like it could be months before I get a scan ect and I can’t cope with this pain. And advice? I have tried a anti inflammatory diet and using caster oil ect too but nothing seems to calm the pain

[Purple_Badgers]

Hi! Don’t suffer in silence- get back to your GP for stronger pain medication while you wait for the MRI / new referral. There are all sorts of painkillers you could try.

I’m on regular daily paracetamol, naproxen and nefopam. I take a daily prescribed omeprazole to protect my stomach from the naproxen, which is essentially a stronger version of ibuprofen. The nefopam makes me a little bit drowsy, so is not suitable to take if I want to drive anywhere (which is not often).

Very rarely, I will take one or two low-dose co-codamol. They do kill the pain effectively, but I only take them if I want to go to sleep, as they knock me out! They also can make me terribly constipated, which is the last thing I need…

Anyway, there is bound to be something that will give you some relief, so worth asking.

Don’t know if you use heat at all? I use hot water bottle, or stick-on heat patch, or electric heated cushion, or microwave hottie on my belly or back and find it really helps.

Hope you get your scan and specialist appointment soon, so they can get to the bottom of your intense pain and formulate a plan to deal with it. X

[Ginge2001 in reply to Purple_Badgers]

Hiya yeah I have tried all sorts nothing helps even liquid morphine I’m still in agony. I have burns of the heat pads ect on my stomach I just feel like the gyni I don’t know what to do so your away to be in pain sort of thing x

[AllthatGlitters]

I won’t add to the pill advice as I know morphine doesn’t work for you.

I was on decepeptyl alongside HRT, I don’t know why but the HRT took away all my pain. The decepeptyl was horrific for me. For reference I have adenomyosis and endometriosis.

I would definitely go back to your GP, ask to be expedited to gynaecology due to your pain level and every day suffering. Not sure if you are aware but you can have a private consultation and then go back onto the NHS waiting list for surgery/scans etc. once you have your consultation, it’s often with a doctor you would see in the NHS (in my experience anyway) and you can ask them to put you onto the urgent list or category 1 list for treatment. I have done this many times. My consultation cost £200.

X

[Cocoacupid in reply to AllthatGlitters]

I had that injection a week ago last Thursday and I too had horrific symptoms almost straight away. The main issue was my mood and my mental health dipped significantly the endo nurse even though I was crying on the telephone was so horrible to me saying you shouldn’t get symptoms for at least two weeks . I told her I’m probably autistic and am being tested for fibromyalgia and my sensitivity to medication is intense. I can’t have codiene or cocodamol as I’m sick with in minutes of taking it. Tried pregabalin and gabepentine pregabalin I was falling over and had some nasty falls and injured myself at work and gabepentin made me have severe high up stomach cramps. Am on naproxen and amotriptiline am still in severe pain. I asked my gp to hat she thought of tibolone but she said in all honesty that only really helps the hot flushes. The dr then asked what are you worrying symptom and I said mood. She has now upped my antidepressants and I feel so much better although I’ve lost a lot of weight really quickly a stone in about just over a week. But to me that’s a good thing as then they won’t have to worry so much if I’m losing weight when I go under in about 11 weeks x

[AllthatGlitters in reply to Cocoacupid]

Hi I have fibromyalgia & CFS, take medications same as you but nortryptaline and naproxen and tramadol. I was like you when on the injection, my mental health went into a dark place, I can’t even describe it, it was horrific. I was sweating all day, hot flushes, waking up dripping wet down front and back. What we have to go through is terrible and nobody else understands (I’m so grateful for this forum) x

[Cocoacupid in reply to AllthatGlitters]

Thank you I also like this forum 💯 the nurse was like have you got a social worker or cpn I said no as I haven’t needed too as said I was discharged from the services back in August 2021 and I said I was really well and then the injection made me so tearful I didn’t want to speak to people and I was feeling really suicidal something I haven’t felt for an awful long time. The endo nurse was literally saying I can’t have symptoms and it’s something else and not the injection was just so so glad I got an appointment with my gp who was understanding as I said nothing has changed apart from

Having that injection I said I have had no events which have been terrible or make me feel that way nothing else changed and she could see and my work colleagues saw I was completely different and not my normal bubbly self. Just thankful 🙏 I’m still here as I was concerned gravely about how I felt. Xxx just nice to know someone else similar to me. So thank you x

[AllthatGlitters in reply to Cocoacupid]

Your nurse is talking absolute rubbish 🤬the injections do give you symptoms, personally for me anyway. It works a dream for others. I gained a lot of weight, it didn’t matter what I ate. I just don’t react to hormones well, tried the pill, and implant in arm, all 🤮

[Cocoacupid in reply to AllthatGlitters]

I know I was so upset as in my letter all it said from the hospital was it was uncommon to have symptoms and you may only get hot flushes. But I had the one that last three months which I had to have as extensive bowel surgery and endometriosis removal to fibrous bands of tissue nerve ending s and adhesions. The implant dropped my mood the pill couldn’t take as it was like I wasn’t taking anything. I was so angry with the endo specialist nurse for not listening to me at all and I have felt anger towards other professionals who haven’t listened to me at all and treat me like I’m everyone else . I’m a professional person I do work in health care. There is such thing as a care plan approach which is tailored for individual need . Everyone is different and everyone needs are different and it’s unprofessional and unfair to think I’m like everyone else. I may put a complaint in but the thing is am worried if I put a complaint in I may never get help from

Them again in the near and. Distant future and she is the only local one to me or it would be totally out of county for me and I can’t afford to that really so I’m a bit stuck on wether to complain or not.

[jen2023]

I stopped taking bpc after being on them for 15 years, i have grade 4 bowel endo. I had the worse abdominal pain and excessive menstrual bleeding of my life, needing blood transfusion. Found out i had a large uterine polyp that was causing the excessive pain and bleeding. Had surgery and removed it, the excessive bleeding and pain stopped, but other bowel related symptoms like constant daily pelvic pain, severe bloating didn't, actually getting worse. Have you checked for polyps or fibroids through ultrasound? For me, acupuncture helped alot. I can't take ibuprofen/ strong pain killers as i have sensitive stomach so natural methods are my only options. I have been on a strict diet for 3 months now (no wheat, processed carbs, dairy, refined sugar, alcohol). Still on my journey to find the best way to tackling my endo pain. Not sure if it gets worse before it gets better? Sending you my best wishes.

[LME5]

Hey Ginge2001, so sorry to read about your suffering. Has your anti-inflammatory diet involving removing (or at least limiting) sugar, dairy, starches (think rice, grains, potatoes), processed foods, gluten/wheat and incorporating supplementation with adequate omega 3, vitamin B complex, vitamin D3 & K2, magnesium (glycinate & malate), curcumin (or turmeric)? That's what's helped me manage symptoms since I stopped hormonal treatment back in December 2022. Hope that helps!