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[Dandelion]

Hello, I am reaching out for help and hope to get things off my chest.

Sorry to go on about this, it is a matter of life and death, literally.

In December, on the phone, Superdrug said Besin's healthcare are having manufacturing problems with utrogestan.
I started this thread, then the menopause society said there is no supply problems with utrogestan, so I thought I had
https://www.menopausematters.co.uk/forum/index.php?topic=64281.0
I know I posted bits about this on other threads, but I feel totally alone and panic stricken.

I put my prescription request in for utrogestan in December and got it, so I felt paranoid for raising that thread.

It's due again now.

I'd like to share a bit of background.
While progesterone is not addictive, for women like me, who are dependent on benzodiazepines (valium in my case-I'm prescribed it) it is addictive, because, progesterone and benzodiazepines bind to gaba receptors.

Benzodiazepine support forums has horror stories of benzodiazepine dependent women coming off/tapering off progesterone, and becoming very ill, bed bound, incapacitated, as it's cross-tolerant.
Dr Elizabeth Vliet, the menopause expert says it's as strong as klonopin. A much stronger benzodiazepine, people can die if they stop taking it suddenly.
So, I cannot run out, - period.
My doctors know about it, they know I cannot change progesterone.
They allowed me to take 200mg utro daily, to keep my GABA receptors stable.

I read the thread above, some women were saying on there, that, while Besins say all is well now, and the BMS say so, some women are still having problems with "stock"
I even read that some woman was advised by her pharmacy that their hormone supplier sends "quotas" to the pharmacy, and other stories about women ringing round pharmacies and travelling 20 mile radius, here and mums net.

I know this sounds like an excuse but ringing round pharmacies and scrabbling around for out-of or low "stock" meds really overwhelms me as I am autistic.

Anyway, Boots sent my text to collect meds, Paranoia made me ring them to "double-check my utrogestan was in stock", after hearing all this hassle online, when I went to collect my meds, guess what - no "stock" of utrogestan till Monday afternoon till they "get their delivery".

I really did think, in December, I was just being paranoid about utrogestan running out.
When my patch was in short supply, I used to think "Thank God, it's not utrogestan in short supply" am I being paranoid?
Is there really a long term manufacturing supply, like some women said?
I fear I will go in boots and they won't receive their supply?
What can I do?
I don't want to be bedridden, I am trying my best to recover, my psych is helping me off valium, and I don't want "lack-of-stock" of utro to set me back like those poor women on the benzo forum who stopped progesterone?
One Texan lady made a great recovery getting off benzodiazepines, then progesterone made her really ill.
I had an American friend who I chatted to from benzobuddies, when she started coming off progesterone she was too ill to talk to me, we lost touch.

I have had abnormal bleeding which my docs know about, and I get 200mg progesterone prescribed daily, which is why Oxford pharmacy refused to fulfil my order and I am afraid other online pharmacies will refuse to give me it, otherwise I would order.

I really hope I am reading too much paranoia into this "out-of-stock-with-utrogestan" business. If I know I am being paranoid, I will be relieved.
It's just when one woman said the story about "stock" is totally different to the story we are being told by Besins and the meno society.

I even dreamt about this last night.
I fear going in boots on Monday, as asked and them saying "Unfortunately your utrogestan is "out-of-stock"
Help? I could cry 

[Flossieteacake]

Hello Dandelion. I totally understand why you are so worried. I think what makes it even harder is when we hear such horror stories like the ones you have read were people were bed bound. Having to rely on Ultrogestan is difficult but one thing I have noticed, often when Boots get a prescription they do not process it until you actually go and ask for it. Then you find out the item is not there and they will order it in. So what I am trying to say is, just because the ultrogestan was not there it does not mean it will not be there on Monday. They tend to know when they have a supply issue and I feel they would have let you know when you called them.

I too struggle to make calls so I understand how distressing it is to have to do this and to have to do something out of routine.

You are not being paranoid. You are just making sure you always have Ultrogestan. It is a pity you cannot get extra when you get the prescription especially as your GP will know your situation and this would be more reassuring. 

Lets work this out one step at a time. Boots say they will have their deliveries on Monday afternoon. How many days of Ultrogestan do you have left? Is it possible to wait until Monday afternoon to see if it arrives and if not we can discuss options? Or do you need to have a back up plan now? I just wonder which you would find more helpful here. I apologise if I am not making much sense. I am trying to type quickly as I know you will be anxious waiting for a reply.

[Dandelion]

Hello Dandelion. I totally understand why you are so worried. I think what makes it even harder is when we hear such horror stories like the ones you have read were people were bed bound. Having to rely on Ultrogestan is difficult but one thing I have noticed, often when Boots get a prescription they do not process it until you actually go and ask for it. Then you find out the item is not there and they will order it in. So what I am trying to say is, just because the ultrogestan was not there it does not mean it will not be there on Monday. They tend to know when they have a supply issue and I feel they would have let you know when you called them.

I too struggle to make calls so I understand how distressing it is to have to do this and to have to do something out of routine.

You are not being paranoid. You are just making sure you always have Ultrogestan. It is a pity you cannot get extra when you get the prescription especially as your GP will know your situation and this would be more reassuring. 

Lets work this out one step at a time. Boots say they will have their deliveries on Monday afternoon. How many days of Ultrogestan do you have left? Is it possible to wait until Monday afternoon to see if it arrives and if not we can discuss options? Or do you need to have a back up plan now? I just wonder which you would find more helpful here. I apologise if I am not making much sense. I am trying to type quickly as I know you will be anxious waiting for a reply.

Hello Flossiecake.
I don't know why the woman in boots on the phone said the utrogestan is in "stock" (crikey I hate that word)
When I went in, my package looked horribly little, and I got paranoid.
Another woman served me then, I looked in the package Yikes!
Our boots gets really busy, really long queues, I was lucky they picked up the phone, I tried ringing earlier in the morning after it opened, and let it ring 3,345,3978 times.
I wonder if they switch the ruddy thing off.

The woman in boots who served me said to come in Monday afternoon for the utrogestan-I'm exam-type nervous they won't have received it. Call me paranoid but I wondered to myself if I was being fobbed off? Or even are pharmacies suppliers fobbing them off.
Boots said they ordered it in.
The lady on the phone broke my trust when she implied that utrogestan was there. It's the first time, I have ever known it not to be there. She said absolutely nothing about supply issues and I don't know why she lied to me, as I specifically asked if utrogestan was in stock.

It's the Superdrug pharmacist in December that set off my paranoia when he said manufacturing problems, and then the woman(en) who said long term manufacturing problems, and then, the woman who suggested the BMS and Besins were lying to us, they weren't her words, she just said what they say (supply issue sorted now) and what customers experience is different (customers ringing dozens of pharmacies, (I dunno how they do it without exploding in frustration) driving a 20 mile radius) scrabbling around.

I am even put off phoning my GP. Dr M, agreed to be my personal GP, as it was too much to repeat the same gynaecological saga to different ones, but, you ring at 8am, surgery closed, you ring again, engaged, then I fear waiting so long, the appointments run out.
I have a paranoia about anything running out, not just meds, but this could break me. I have had enough difficulty in my life (not just meno), I was kinda hoping at my age, I would be on the road to recovery. I had 14 years of meno, bleeding off and on.

I go get two months supply when I get it from boots.

I have 14 days of supply, so, yeah I am being a bit paranoid, because I read some women waited a month, and one mentioned the pharmacist laughing when she asked about it, not sure if that was on here or mums net. I just want a seamless supply, as gaps will be disastrous.

I wish I could order privately but scared of being refused, as my case is complicated and they would have to contact my GP.
Oxford pharmacy refused me as I use double the amount of progesterone normally supplied.

I was kinda hoping someone had some spare boxes they could send me.
You are very kind, you do make a lot of sense, sorry this reply is so long and took a while to write.
I would find it more helpful to have a backup plan.

[Flossieteacake]

Could it be the ultrogestan was in stock but they had not saved one for you and somebody else got it? I totally understand you worrying. It is horrible to be told it was there and once you turned up you found that was not true. The Boots here is like that. It is impossible to get through to them by the phone. I am sorry you had to phone so much. I can understand this has caused you more stress because you were told it was there when it was not. Now you will worry it will not be there on Monday either. They get their deliveries on Monday so there is every chance it will be there.

Oh gosh, that must have been so distressing to hear what the Superdrug pharmacist said. I am sorry. That must have made you worry so much. It is hard when there is always a battle with medication. I understand why you fear medication running out. When we are dependent on it then it is a horrid to thought to think it will run out.

You have 14 days left. On Monday check if Boots have the ultrogestan. If they do not then perhaps they can call the nearest branch for you to see if they will have one instead.

With mumsnet, just be aware that people often only post when they have a problem. There will be many people who did not have any issues with getting ultrogestan but those people would never post on a forum as they would not have a need to. You will not need to wait a month as your Dr understands how vital it is you get your prescription and they will not allow that to happen.

It is reassuring to have a seamless supply but Monday is not so far away. If Boots do not have it then they can use their system to check if another branch has some. Boots are able to do that as I have had them do that for me before. I am sure you will get some. I understand you are worried. You have read a lot of negative things about people having trouble getting theirs but this does not mean Boots will not have yours ready for you on Monday.

Your post was not too long and you have nothing to apologise for.

[Dandelion]

Could it be the ultrogestan was in stock but they had not saved one for you and somebody else got it? I totally understand you worrying. It is horrible to be told it was there and once you turned up you found that was not true. The Boots here is like that. It is impossible to get through to them by the phone. I am sorry you had to phone so much. I can understand this has caused you more stress because you were told it was there when it was not. Now you will worry it will not be there on Monday either. They get their deliveries on Monday so there is every chance it will be there.

Oh gosh, that must have been so distressing to hear what the Superdrug pharmacist said. I am sorry. That must have made you worry so much. It is hard when there is always a battle with medication. I understand why you fear medication running out. When we are dependent on it then it is a horrid to thought to think it will run out.

You have 14 days left. On Monday check if Boots have the ultrogestan. If they do not then perhaps they can call the nearest branch for you to see if they will have one instead.

With mumsnet, just be aware that people often only post when they have a problem. There will be many people who did not have any issues with getting ultrogestan but those people would never post on a forum as they would not have a need to. You will not need to wait a month as your Dr understands how vital it is you get your prescription and they will not allow that to happen.

It is reassuring to have a seamless supply but Monday is not so far away. If Boots do not have it then they can use their system to check if another branch has some. Boots are able to do that as I have had them do that for me before. I am sure you will get some. I understand you are worried. You have read a lot of negative things about people having trouble getting theirs but this does not mean Boots will not have yours ready for you on Monday.

Your post was not too long and you have nothing to apologise for.

The lady just reassured me it was in stock.
She said they were behind, so I would get a text Monday.
Shortly after that I got a text and felt relief, but I got scared on the way "just in case" the lady made an error and I'd get all my meds but utro. I got all my meds but evorel and utro

My pharmacy is only a walk away.
I am sorry to say this, but when I rang 3 other pharmacies first thing one was engaged, and they all said "out-of-stock" That word "Stock" makes me want to kick something, I just couldn't face ringing anymore. I feel weak, but I just get too overwhelmed with "Unfortunately...." I hate that word as well, it pi$$es me off.
I sound really grumpy, I like to be happy.

It's too difficult to speak to my GP, the difficulty in getting hold of one, has slowly increased over the years. I get nervous about ringing them as well.
The staff in boots seem a bit pi$$ed off with customers.
The people in the queue get pi$$ed off with people at the front saying "Why haven't you got"....."I haven't got".....
The whole energy of the experience is repugnant to me.

I rang the two Lloyds, no joy, Sainsbury's no joy, Morrisons, engaged, and I just get so deflated and angry, it's a horrible feeling.
Fear of being incapacitated, all because of "Stock"
I never remember things being this difficult in the 1980-1990's, you could talk to GP's pick up prescriptions, easy, I hate hassle.
I know no one likes it, I just find it overwhelmingly heavy.

I feel a bit intimidated by the staff in boots, like they want to fob customers off.

I'm dreading Monday.
Today, I told myself, "Don't worry, you'll get your utrogestan" "stop fearing it won't be there, the lady told you" yet here I am without it.
Thanks for saying my posts are not too long.

Someone on here sent me some a few years ago, I think I forgot to put my repeat in or something, I am hoping someone comes along and says "I have some spare for you"
There were some negative comments about shortages on this board as well.
I just detest anything like this, not getting hold of stuff, being lied to by BMS and Besins, one woman said we on the ground struggle to get hold of stuff on my other thread, which I only raised in December out of paranoia.

[Flossieteacake]

Ah right. I can understand you feeling anxious. I think there is every chance your prescription will be there on Monday.

I get why that is a trigger word. You have had very bad experiences when that word has been mentioned to you. I think it is so stressful calling round to check medications. I do not blame you for not wanting to call any more. You are not weak Dandelion. You are tired and frustrated. This does not make you weak. I find you very brave for reaching out for help on here.

It is very stressful going to Boots and also having to get a Dr appointment. The experience is never easy is it. I agree that is did seem easier to get medications in previous decades. I am really hoping on Monday they will have the Ultrogestan for you.

[Kathleen]

Hello Dandelion.

I have an unopened pack of Utrogestan 100mg capsules that I don't need. They expire in December 2023.

If you would like them send me your address via pm and I will post them to you tomorrow.

I hope this helps you. Take care and sending hugs.

K.

[Mary G]

Dandelion, first of all, there is nothing unusual in feeling the way you do about much needed medication.   I'm the same and completely reliant upon Oestrogel, progesterone gel and amitriptyline to feel good and keep my migraine auras away and I would be desperate without those meds.

This probably won't help much but there are no shortages of Utrogestan in Spain so it not a pan European problem.

I would take up Kathleen's very kind offer and perhaps someone else on here has some Utrogestan to spare?   I'm afraid mine are out of date.

Somebody (two members in fact) reported me to the moderators in the past for offering to help someone out with HRT but I hope that will not happen on this occasion, particularly in light of the current supply issues in the UK.

[Nas]

Agree with Mary. We are at the mercy of the pharmaceutical companies etc. I would be the same with amitriptyline and oestrogen patches.

I’ve got some utrogestan but think they are out of date too.

[Dandelion]

Ah right. I can understand you feeling anxious. I think there is every chance your prescription will be there on Monday.

I get why that is a trigger word. You have had very bad experiences when that word has been mentioned to you. I think it is so stressful calling round to check medications. I do not blame you for not wanting to call any more. You are not weak Dandelion. You are tired and frustrated. This does not make you weak. I find you very brave for reaching out for help on here.

It is very stressful going to Boots and also having to get a Dr appointment. The experience is never easy is it. I agree that is did seem easier to get medications in previous decades. I am really hoping on Monday they will have the Ultrogestan for you.

Hello again 
I hope so. I am fearing them saying there is no prescription in, or no stock was delivered.
Thanks for getting why "Stock" is a trigger word for me. Another trigger word is "Unfortunately" I detest that word. So many staff in different places use it.
Yes, I couldn't see myself phoning over half-a-dozen pharmacies to be turned away.
Thank you for saying I am brave for reaching out for help on here.
Yeah, I just don't bother getting Drs appointments now, where as in the past I would have phoned.
As for Boots, I don't think they like customers. The queue went from the pharmacy right to the back wall the other day.
Yes, it was definitely easier to get medications in earlier days. I remember in 2010 saying a pretty negative thing about customer service to my mum, and she said "There is no customer service" even more negative than me.

[Dandelion]

Hello Dandelion.

I have an unopened pack of Utrogestan 100mg capsules that I don't need. They expire in December 2023.

If you would like them send me your address via pm and I will post them to you tomorrow.

I hope this helps you. Take care and sending hugs.

K.

Thank you so much, pm on way.
I love the helpful warmth on these boards and people reaching out to help me.

[Dandelion]

Dandelion, first of all, there is nothing unusual in feeling the way you do about much needed medication.   I'm the same and completely reliant upon Oestrogel, progesterone gel and amitriptyline to feel good and keep my migraine auras away and I would be desperate without those meds.

This probably won't help much but there are no shortages of Utrogestan in Spain so it not a pan European problem.

I would take up Kathleen's very kind offer and perhaps someone else on here has some Utrogestan to spare?   I'm afraid mine are out of date.

Somebody (two members in fact) reported me to the moderators in the past for offering to help someone out with HRT but I hope that will not happen on this occasion, particularly in light of the current supply issues in the UK.

Hello 🙂
Thank you for validating my feelings, it means a lot.
I know how migraine auras feel, trazodone gave me them, that horrible white dot in the centre of vision, turning into a bigger jagged sparkly thing.
I did not know they did progesterone gel, is it bioidentical? Is it on the NHS?
My sister has a house in Spain, I got patches of her in the 2019 shortage, but we don't get on, I let her bully me as a kid and mum/her gang up on me as an adult - sorry 😢
I dreamt about her coming to see me unannounced, and in my dream I told her to f**k off. 😮
I have taken up Kathleen's kind offer, and pm'd her. Also another lovely lady will post some, and yet another said she will have a look to see if she has spares. I was overjoyed when I read these kind offers.
I'm so sorry to hear that you were reported to the moderators for helping someone out. I sent a canister of oestrogel to someone on here, I didn't need it, and they did, there was yet another shortage.
I might just be being ignorant here, but I don't see why there should be a shortage of any meds at all, more customers using hrt, = more money to be made selling them.

[Dandelion]

Agree with Mary. We are at the mercy of the pharmaceutical companies etc. I would be the same with amitriptyline and oestrogen patches.

I’ve got some utrogestan but think they are out of date too.

Thank you anyway.
I can't wait till I am no longer reliant on pharmacies.
After I have weaned off valium, I plan to wean off utrogestan, using olive oil to increase the volume and a tiny syringe, plus scalpels to cut that capsule skin into tiny little bits.
I think I will ditch the oestrogen too, I am bleeding on 25mcg, and the gynae said any more bleeds and it's another hysteroscopy, - no thanks.
I think I bled as I upped the oestrogen to 150mcg for a short while, but came back down, I am sure the bleeding will subside, now, on 12.5mcg.
Roll on the time when I don't need hrt or any pharmaceutical meds.

[Kathleen]

Hello again Dandelion

I have seen your pm and I have replied this morning. I have one question about the type of postage that would suit you best. As soon as I hear from you I will send the Utrogestan.

Happy to help and wishing you well.

K.

[Mary G]

Dandelion, re my progesterone gel yes, it is body identical but I'm afraid it's not available on the NHS or anywhere else in the UK as far as I know but it should be because it's very good with zero side effects - in my case at least.

Please let us know what happens with the Utrogestan prescription.