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[Sandie64]

Hi
I’m 57 post meno for 5 years and have been taking Femoston Conti 1/5.  This is my 5th type of hrt in 4 years and my GP today agreed that I am Prog intolerant.
I do not want to have the mirena coil as I have no control over when it’s removed.
I have been on 2 different combined sequi tablets in the past and the estrogen part was life changing in the first two weeks then 1st day of prog and bam! Crying all the time , felt wretched and suicidal.
I have tried patches but didn’t absorb them as they wouldn’t stay on.
Next was Estrogel and Utrogestan 100mg.  Had very bad indigestion and felt nauseous every day for nearly 3 months, also mood was low again.  I tried them vaginally but still had these problems.
Now I’m on Femoston Conti 1/5 and have crashed into depression again, everything seems hopeless and I just don’t want to be here anymore.
As I mentioned my GP has agreed that I am Prog intolerant.  I asked her to refer me for a hysterectomy.
Her first question was do I have health insurance and when I said no she said that this is unlikely to happen then. 
She said my next option is to go onto estrogen only and have regular uterus scans.  Is this even possible what about the risk to my health when the endometrium builds up?  I have to stop all hrt and she will phone me in two weeks time.
I feel at a total loss and I don’t know what to do.  I can’t go on living like this.
Going private with a pay plan is doable but would a private consultant still have reservations about having a hysterectomy on these grounds.
My life is in ruins and I feel like I just exist.  I can’t go to work as I’m constantly crying at the moment.  Not being able to work is massive for me as it has always kept me going in the past and I worry that I will lose my job through this. 
Please ANY advice will be much appreciated.  I feel lost and alone in this.

[sheila99]

I'm sorry you feel so wretched. Are there any progestogens you haven't yet tried? Have you tried provera? Could you cope with it ona long cycle (I assume you're meno)? Some women use a sequi regime on a 6 week cycle so they more 'good' time on oestrogen only but you'll have a bleed. I don't think using nothing is a good option. I completely understand your reluctance to have a mirena, I feel the same. But most people do get on with it very well and in your position I think I'd give it a try. Compounded progesterone may be an option too, there's a long thread on it simewhere. It would be last on my option list though as there's no control over the ingredients like there is for a manufactured medicine. It's unusual to get indigestion and nausea using utro vaginally. How long did you try it this way for? Just wondering if the oral effects hadn't completely gone.

[Perinowpost]

I feel for you Sandy64 your reaction to progesterone is exactly the same as mine. If I were you I wouldn’t try the mirena, I say this after trialing it myself and having to have it removed after 6 months due to awful negative side effects - so if you know you’re progesterone intolerant I’d stay well away.

Like you I’ve also tried every progesterone available on the nhs and  still not found one I can get on with - I’m 57 and have been on hrt 10 years. I currently use utrogestan vaginally x7 days with regular scans. It makes me very ill for about a week every cycle, but it’s the best of a bad bunch.

Like Shelia99 says there is also provera (I didn’t get on with it). Also, recently I have been offered cyclogest 100mg vaginally every other day. It had been suggested to me that some women who are very sensitive to utrogestan get on better with this, and I am going to trial it next cycle. And like Sheila99 says there’s the option of compounded progesterone. Lot’s of women have found a solution this route but it’s not always straight forward and can be expensive. I myself tried 50mg of cp in tablet form but couldn’t even tolerate that. I have considered revisiting it (with another clinic) though, if the cyclogest doesn’t work as I can’t carry on like this forever.

As for your GP’s comment about having to pay for an hysterectomy that’s very interesting. I’ve often wondered if I might get to that point (although It would be a last resort) and wondered how much it would cost.

Sorry that there aren’t more positive solutions out there just now, but don’t give in hopefully any of the above might work and they’re worth a try.

Wishing you well xx

[AKatieD]

No solutions I am afraid.

Also P i tolerant after trying Utogestan tabs vaginally and orally.

Trying crinone but getting breakthrough bleeds so think this might get the plug pulled at next consultant visit tomorrow.

G.p. wont allow regular scans as too expensive to nhs (albeit likely to be cheaper than knee replacement I will need soon without the oestrogel).

Dont want mirena as you say or hysterectomy. 

Where next...

[Kathleen]

Hello Sandie 64 and welcome to the forum.

I completely sympathise and feel your pain.

I am post meno and I am not sure if I am prog intolerant as I had a brief spell of no Oestrogel and no Utrogestan and I didn't feel great then either! I also experienced  a lot of crying when I came off all HRT for eighteen months.
I concluded that my low mood and crying definitely resulted from low oestrogen which may or may not be exacerbated by prog intolerance.

For the last month my regime has been two and a half sachets of Sandrena gel, 0.60 ml of Androfeme (testosterone) and 100mcg of Cyclogest alternate nights. Despite the emotional stuff I hoped I was getting somewhere but now I have started spotting so a review with the meno clinic will be necessary. I promise to update the forum when I have spoken to her but like you I am struggling to carry on this way and I am exhausted by it all.

You are not alone I promise you.

Take care and sending hugs.

K.

[Flossieteacake]

Hello Sandi. I really am sorry to read all you are going through. I have no advice but just wanted to tell you that patches would not stay on my skin either until I used tegaderm dressings over them. You may know this already but I just thought I would mention it.

[VictoryV]

Hi Sandie64, I’m so sorry you’re feeling so bad and for the length of time you’ve been suffering and trialling so many avenues. I wouldn’t have a Mirena either and I don’t know if I’m intolerant or not yet.

You blinking well shouldn’t have to give up work forever! Did the GP say how often you’d have to have the uterus scans? If you’re good on estrogen only and can get scans for £90.00, if GP says 3 times a year, is £270.00 within reach? It is cheaper than the hysterectomy with no surgery downtime.

If you try every progesterone mentioned above and nothing helps the scans could be an option?

I hope something works and that you keep your job.
V.xx

[PeriWhat?!]

Hi Sandi, I'm so sorry you're going through this. I completely sympathise. I've been in that awful dark place from progesterone. Suicidal mood swings, unable to get work done, crippled with anxiety, it was hell.

I was intolerant to progesterone in three different types of patch and pill form including the 3-monthly version, and I was also very resistant to the idea of a Mirena coil (I'm 46 and been in peri for 5 years).

I finally got convinced to have a Mirena coil after I got a referral to a menopause clinic and talked to a nurse practitioner who really knew her stuff. She explained I wouldn't get the mood swings from peri regimes any more with a coil because the progesterone release is lower and constant, so I wouldn't get the peaks and troughs, and also the progesterone would be where it's needed, not in the entire body. Three months on... so far she is right! She also reminded me that if I wasn't happy with it, I can have it removed any time I want. Apart from a little string high up in the vagina, I wouldn't know it was there. There is a tiny bit of blood still, but this is supposed to stop soon and compared to how awful I was feeling before, it's worth it.

Like you, I felt like I was running out of options and the benefits of the oestrogen were too good to risk losing as they'd really improved my quality of life. If you decide to try a coil and if it's possible, go to a menopause clinic/gynae expert/sexual health clinic for the fitting - someone who does it all the time, as opposed to your regular GP surgery, where they might not be as well practised. I was expecting the fitting to be awful, so as a result it was far less painful than I expected. Bearable.

If I think about it too much, I still feel slightly grossed out at the thought of a coil inside me for 4-5 years, but I'm here and no longer getting waves of suicidal thoughts, so it feels worth it.

I have had a few minor anxiety surges since I had the coil fitted, which the nurse thinks are my own peri hormones, so I've now got low-dose antidepressants for those as well.

I'm not trying to sway you one way or the other, just wanted to let you know I understand a bit of what you're going through and the coil might not be as bad as you think, certainly less invasive than hysterectomy. Sorry for rambling on, hope some of it is of use.

[Sandie64]

Thanks to everyone for replying.
I have an apt with a gynae consultant on 7th Feb and will be asking for a hysterectomy.  I’m 100% positive this is right for me.  I’m 58 this year and don’t need my cervix, uterus or ovaries anymore, that’s if ovaries haven’t shrivelled up and absorbed into my system now anyway.
I need estrogen but still having my uterus is denying me this.  I will definitely be on the psyche ward if I have anymore progesterone, it makes me feel truly suicidal.
I’ve felt it very difficult to approach this subject as reading about the horrendous, painful conditions that some ladies have leading to hysterectomy seem to make mine pale into insignificance.
I just know I can’t go on like this much longer.  I have been on antidepressants for years and they do nothing for the hormonal stuff going on.

[Nas]

I totally get where you are coming from Sandie.
I am experiencing bleeding on just about every regime.
I am also post menopausal, need Oestrogen, but my womb hates it.

If I were you, I would have the hysterectomy and be done.
Like you, I hate the idea of a coil and not having control of when it is removed.

Argue your case for hysterectomy, it’s your life and body and right now, you/ we have no quality of life. I’m always bleeding and you are feeling grim.
That surely warrants a hysterectomy, going forward?

I wish you well and best of luck with your appointment on the 7th.
Hormonal hell is no place to be.

🌸🌸

[VictoryV]

PeriWhat?! - thanks for posting your experience with the Mirena, I’m trying to get an appointment for a fitting. It’s really refreshing to read positive stuff about it. Hope you’re still feeling good.

Sandie64 - i’ve not had a hysterectomy so can’t share anything helpful but I really hope you get help, a solution, ASAP. Good luck for the 7th. Xx

[PeriWhat?!]

@VictoriaV - all still good thanks, although I've just ditched the antidepressants as I felt as though they were cancelling out the mood boost I'd had from the oestrogel and were giving me awful stabbing headaches all day. Good luck getting your appointment! Keep us posted.

[Sandie64]

Yesterday I had great news.  My gynae has agreed to let me have a hysterectomy. 
Following 5 horrible years of hrt with progesterone nearly sending me to the psyche ward I now have light at the end of the tunnel and can move on.
The surgery will be in around 2 months time.  I forgot to ask him if I could restart my Estrogel, I stopped 3 weeks ago due to a breakdown.
If I know I’m having my uterus removed do you think it would be ok take unopposed Estrogen just for a couple of months?

[Perinowpost]

Good news Sandie64 so pleased for you. I should think it’ll be ok to take oestrogen for a couple of months x

[sheila99]

I hope it goes well. I don't think taking E only for 2 months will be a problem it's only a little over my normal 6 week cycle. If you're worried about it you could take a lower dose.