Any treatment options I’ve not tried?

[Dancer1992]

Hi,

I’ve been on all pills, combined pills, mini pills, implants, mirena coil and Zoladex injections for endometriosis pain relief alongside prescription medication such as mefenamic acid, naproxen etc. I’ve Had the laparoscopies but they couldn’t get to the endo. Now at the stage that my doctor is suggesting have a baby then a hysterectomy or have a hysterectomy because there is no more options. Not really a small decision at 27. I don’t want a baby now and I don’t want a hysterectomy now.

Seriously can’t stand this pain any longer though so it’s decision time.

Btw tried all the diet plans. Gluten free, pescatarian. Done counselling, exercise, the accupuncture. Tried Chinese medicine, CBD oil, every homeopathic thing going you can get from weleda or Holland and barratt.

Anyone got any new ideas of what works for them that I could try? You know without the side effects of osteoporosis that I’m getting on Zoladex.

Any suggestions welcome!

Please ignore the slightly sarcastic nature of this post, I’m literally past it. If you hadn’t noticed already!

Xxx

[angiecxx]

Hi ok firstly you need to go back to your gp asap and ask for stronger pain relief they can definitely give you something stronger. Mefenamic acid is not a pain killers it's meant to reduce bleeding. Secondly it seems that your gp doesn't really care about you and what you are going through 😠😠. Telling you to have a baby then a hysterectomy or just a hysterectomy is ludicrous! !!! Neither will get rid of endometriosis full stop it's always going to be there whether it lies in dormant for a few years after having a hysterectomy/ baby I had a hysterectomy two years ago and to this day I'm still suffering from pain plus like another 100 symptoms 😕😕 and because there were so many complications with the surgery and I was very poorly after for many many weeks I got diagnosed with fibro myalgia, you know it's like hey she already has one uncurable condition might as well give her another 😒😒 I was diagnosed over 20 years ago with endometriosis and like you i was told have a baby( it will make the endo go away meh 😬) and the day I saw my specialist i was in so much pain and bleeding heavily which he and the nurse could see when I was laying down because he was going to exam me and saw how heavy I was bleeding so he knew if he pressed down on my stomach...well I wouldn't of been happy putting it mildly that's when he suggested that I have a baby i had being seeing my specialist for 2 year's and he apparently didn't know I have 2 children they were toddlers even though it was in my notes 😒😒 anyway sorry for going on i really do urge you to see a dr asap ask for different pain killers and do not leave without any then I suggest you tell your gp to Google endometriosis maybe then they will know what you are going through physically and mentally on a daily basis and if you get no joy ask to see another gp I'm so sorry for ranting away about myself 😕😕 please let me know how you get on if the pain gets too much go to a.n.e 💛💛x

[Dancer1992 in reply to angiecxx]

I am severely allergic to Codeine so it's a big problem with my meds.

I know it isn't a solution but I am running out of options of things that might potentially help. I have been with my Gynae for over 10 years and she is very good. We are looking at pain management and anything that may have some kind of help is worth exploring in my opinion.

I'm just trying to search for new pain management options.

[angiecxx in reply to Dancer1992]

Have you tried tramadol? X

[Dancer1992 in reply to angiecxx]

Tried it, kept passing out and nearly had a seizure. So that’s discounted unfortunately.

[Sweetyassi]

Hi,

Sorry to hear that you are suffering. I like you I have tried everything, including having a hysterectomy. I'm still in pain, so having a hysterectomy doesn't work at all. No painkillers work for me. I tried a from pain management the treatment I had done in July it's called Lidocaine Infusion Intravenously and was given Ketamine. What it does, it calms all the nerves in your body and allows it to reset as your body is stressed due to pains you don't have an off switch like me. I will find out in December if this treatment worked on me I have been given new painkillers from pain management called carbamazepine, again will find out soon if these new painkillers work. Its working slightly on my other pains like fibromyalgia and spine pain a little bit but it's still early to see if it helps with endo pains.

Sweety.

[Dancer1992 in reply to Sweetyassi]

Let me know how you get on please with this treatment plan!

Seems like I've tried everything now........just don't know what my next move is going to be.

I'm miserable and it's because of my endo. I'm sort of reluctant to go on anti-depressants, I know why I am miserable and my endo is not going to change whether or not I'm on anti-depressants or not. Just numb my feelings towards it.

Got enough side effects without wanting to add some more!

[Sweetyassi in reply to Dancer1992]

Hi,

I will let you know if works.

I understand how you feel, I'm the same. Feeling depressed and in constant pain. Wish there was a magic pill we could take to get better.

Sweety

[Littleblackkatx]

Afternoon, sorry to hear you’re struggling so much. I’m 21 now and have just had my third lap and can completely empathise as I’ve had 3 different gynaecologists recommend a hysterectomy for me since I turned 19.

2 things you could/may have already tried,

1) simple and You may already tried it, but a strong naproxen based painkiller (prescription only). These are the only painkillers I’ve managed to find that work even a little bit. They’re used massively in the US but i find very few gp’s here seem to use them. I used to be on tramadol but aside from making my head feel horrendous it did nothing.

2) Visanne. This is a dienogest based drug that isn’t actually available in the uk. However if you can find a private gynaecologist that will write you a prescription there’s a few places that will ship from abroad (an especially good on in Canada), or it’s available in Europe. Definitely worth a google if you haven’t heard of it already!

[Dancer1992]

Thank-you. I’ve had naproxen before.

Will look into Visanne.

Thanks for your help.

[Bethleah]

Hi

Can’t help with the pain but I’m now taking antihistamines to help with the inflammation. Still not sure if they are making any difference. I’m under the pain clinic attached to the bgse endo centre. They recommended the antihistamines as they take a more holistic view rather than solely focusing on pain management. I also see a physio through them and they recommended a book which gives simple exercises to first relax the muscles then strengthen them. It’s heal pelvic pain by Amy stein. It takes a long time but has helped me somewhat. I suffer with side effects too, most are worse than my endo symptoms. I may try cod oil in future. Hope this helps.