Cannabis update: Hi I started two oils... - Endometriosis UK

Endometriosis UK

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Cannabis update

Moon_maiden profile image
20 Replies

Hi

I started two oils CBD (with some THC) 0.2ml twice a day £50 and THC 0.05ml once day and increased to 0.1 after three days, £30, both 10ml.I’ve a follow up next week.

I think it’s helping, pain hasn’t been as bad and I take the THC mid afternoon so I can eat with less pain. It’s not 100% and so far doesn’t stop the tremors/shaking when standing or sitting. I’m not getting the absolute despair pain if that makes sense.

Still to find out what’s causing it all, whether Endo damage or not. I’ve a NM Amyloid scan next week to check for protein build up.

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Moon_maiden
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20 Replies
AllthatGlitters profile image
AllthatGlitters

hello. Where do you get the cbd oil? I have seen loads online but never sure on what strength required or if it works x

PS glad it’s helping your pain 😀

Moon_maiden profile image
Moon_maiden in reply toAllthatGlitters

Hi

The med comes from Curaleaf Pharmacy. These were both on prescription, I’m not sure if the CBD needs a prescription or not though. It depends on the level of THC. The consultation was £50.

I went for both this time, but likely just stick with the THC next time and see how it goes.

How are you?

laura98 profile image
laura98 in reply toMoon_maiden

how did you get the prescription for the thc? I’ve never been able to find any in the uk, but in the past I have found cannabis to help, but don’t like smoking it. Thanks!

Moon_maiden profile image
Moon_maiden in reply tolaura98

Hi

You can only get a prescription privately at present, there are schemes to reduce costs. I’ll PM you.

Bethleah profile image
Bethleah

good that you’ve found something that helps you. Even if only a little 🤗

Moon_maiden profile image
Moon_maiden in reply toBethleah

Thank you.

How are you?

Bethleah profile image
Bethleah in reply toMoon_maiden

sh*t as always. Endo flare up so more pain especially during the night and other symptoms. Hot flushes returned. Waiting on referral to ent and need surgery for primary hyper parathyroidism. This year couldn’t be better 🤦‍♀️

Moon_maiden profile image
Moon_maiden in reply toBethleah

Crap, sorry you aren’t doing better.

Do they suspect Endo round the thyroid or unrelated? Any timeframe for op?

Worth looking at other HRT? Always trial and error for our stuff, lucky if it’s right first time

Bethleah profile image
Bethleah in reply toMoon_maiden

not connected to endo. No time frame for op. Saw endocrinology who ordered genetics test. No results yet. He wrote to gp who then had to make appointment to talk it through with me. Didn’t write to me direct. She then went back to endocrinology. Next thing I have another referral to see them. Suspect there was some massaging of nhs figures. Speaking to them in mid December. Got scan Friday. Then a bigger one takes all day as in 2 parts mid November. I’m on 1/2 patch conti . It’s that or nothing as other hrt options not suitable. So I’m basically screwed . Waiting to hear about pelvic mri as not had one in 5 years. Unfortunately I had to reschedule it twice so they have to pass it back to gynaecology to re refer me. One big mess. Now dealing with 2/3 nhs trusts. For different conditions.

Moon_maiden profile image
Moon_maiden in reply toBethleah

It doesn’t just rain these days just chucks it at you.

interesting about genetics test, I always request results from the hospital, hate not knowing

I’ve noticed the Gastro keeps passing back stuff for GP to organise. Definitely about figures and passing the buck.

🤞 for scans and show something. Answers are so important. Let me know how they go

once thyroid is sorted that should help the hormones and may settle menopause symptoms

Your GP can refer for MRI, might be quicker and they’ll understand all the difficulties you faced.

I’m under two, one gastro and pain, the other for heart.

The systems are supposed to talk to each now and no excuses for not seeing records. It’s just a nuisance at times.

Bethleah profile image
Bethleah in reply toMoon_maiden

thx. I’ll ask gp about mri . The endo asked for ca125. I asked if I could get it done through gp as local. Had it done then gp sent me the results to pass onto endo. 🤷‍♀️wth. Still waiting to hear what they mean. No one talks to each other properly. I’m sure the nhs could be more efficient and save money by making sensible changes and streamling processes.

Moon_maiden profile image
Moon_maiden in reply toBethleah

what was the result of the CA125? I had it when they were ruling out bowel cancer, it was 12 and range was 0-34.

Considering they can send direct messages and Gynae can see results anyway we still abe to get involved to make sure things happen. The NHS could save a fortune if they didn’t waste so much time with incomplete operations and tests that are worthless. They know ultrasound is useless for Endo unless they really know about it, yet still persist to likely show they are doing something 😂 They don’t talk at all, it’s like GPs and hospitals are enemies.

If there’d been a colorectal surgeon at hysterectomy I wouldn’t have needed at least one op. I was quoted £20K 🤣as a joint op, done on NHS. In the same breath if the colorectal surgeon looked everywhere wouldn’t have needed the gallbladder out with further op. 🤦‍♀️

Sorry, going on too much 😂

Bethleah profile image
Bethleah in reply toMoon_maiden

I agree. Nhs makes no sense. My ca 125 was 17.4.

Moon_maiden profile image
Moon_maiden in reply toBethleah

NICE tell drs not to by just the blood test. At least it seems to rule out cancer in the main.

How’s today going, any better?

I had blood test, around ten vials, vits , mins, usual and allergens.

Bethleah profile image
Bethleah in reply toMoon_maiden

no change. As have us on Friday and rental inspection tomorrow have to take it extra easy to reduce risk of worsening symptoms limiting my ability to manage it. How about u?

Moon_maiden profile image
Moon_maiden in reply toBethleah

Sorry it’s all so crap, makes everything so difficult to manage.

Make sure the agent or landlord is aware you’re not hundred percent if they whinge. 🤞 all goes well. Have you a list of repairs?

I ate, THC hasn’t kicked in yet. Treating it as dessert 😂

Username12345678 profile image
Username12345678

thanks for the update

Moon_maiden profile image
Moon_maiden in reply toUsername12345678

I hope it helps 🙂

How are you?

najamsoc profile image
najamsoc

I didn’t know CBD was an available option. Do I need a prescription to buy some? How do I calculate my dosage?

Moon_maiden profile image
Moon_maiden in reply tonajamsoc

Hi

You can buy CBD from just going online or store, but strengths vary. Mine is on prescription, separate CBD oil and THC oil. THC is the active ingredient that can give the ‘high’. I’ve not had a high as such but does help with pain. (Do get munchies sometimes 😂) THC is only on prescription through a specialist prescriber, usually a consultant or a prescribing pharmacist who’s had training. The consultation was £50 as they are trying to gather evidence for the NHS.

Normal CBD oil doesn’t have any THC, they can’t sell it in shops if it did. There’s an allowance of a very minuscule percentage but nothing that would have any effect.

Please let me know if you have any questions. I split doses through the day depending on what I’m doing.

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