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[Jules01]

Hi. Sorry to start a new topic. I was hoping for some advise if possible from like minded women.

After 30yrs fighting and being dismissed from age 17yrs. I was finally diagnosed outside the NHS with deep endometriosis, adenomyosis, ovarian endometrioma's (choc cysts), fibroids and cervical stenosis. I had to have a total hysterectomy, tubes, ovaries, cervix and endo surgery. I am currently day 19 post op and now fighting a new fight with everyone. I ended up having to go private, which wiped me out but I just couldn't take it anymore. The degree of damage to my bladder, bowels, rectum, ligaments, nerves and pelvic floor was so extensive. My bladder and bowel are now struggling to function and my ligaments are preventing me from walking so recovery is slow. But my biggest concern is HRT.

I was on 50 Evorel patches leading up to surgery in preparation (2wks estrogen/2wks combined) I now need 100 due to the dramatic jump into surgical menopause. Nights sweats are more like a full night bath, head to toe dripping wet. My mood is very low and after a very dark night I took drastic action against my consultants advise and put two patches on, which I have continued. I have had some improvement so far. But my concern is with progesterone. I did so much research leading up to the surgery and everything said I needed combined HRT for at least 2 yrs post surgery to prevent the endo growing back. But my consultant and emergency GP appointment both insisted I only need Estrogen and have refused to prescribe progesterone. I am terrified of the endo coming back. I understand they are professionals but even the British Menopause Society states that progesterone is needed. Especially in cases with widespread deep endo. Has anyone had any similar experiences with this? Maybe I just have trust issues after being dismissed for years and years but I am scared. I have already been told my bowel and bladder will never fully recover and I now need to see a urologist etc. Pelvic floor exercises have been really painful for years and still are now. I feel like I'm screaming but still being ignored.

Sorry for the long message ladies. Many thanks in advance 


     

[bombsh3ll]

I am so sorry for the way you have been dismissed and not listened to, with the resultant suffering and that you are still being harmed by the failure to prescribe a progestin in someone with a history of extensive endometriosis.

However you do have options and you have more power than you think.

I agree that after clearance of such extensive endometriosis you really require ongoing suppression of any remaining deposits. The worse the disease is, the less and less feasible it is to remove every endometriotic lesion.

Particularly if you plan to take long term estrogen, these deposits can proliferate and cause further problems, including a small risk of malignant transformation.

I would consider tibolone - this has estrogenic, progestogenic and androgenic activity, replacing the lost hormones whilst providing good suppression of endometrial tissue.

I have seen multiple women in your situation thrive on tibolone post hysterectomy for severe endometriosis.

This should be relatively easy to obtain on the NHS.

Your other option if using estradiol alone patches and struggling to obtain concurrent progestin treatment on the NHS is to buy either Slynd or Desogestrel (dose of desogestrel for endometrial control is 150mcg ie two 75mcg tablets). This should be taken continuously. You can buy these without a prescription from pharmacies up to age 55 if you say it is for contraception.

However long term I would find a provider that understands the physiology and risk of using estrogen alone after clearance of extensive endometriosis and is willing to provide safe care for you in accordance with current guidelines.

You may have to pay for a consultation but hopefully they can then write to your NHS GP to continue the prescription.

[joziel]

Jules, I am a fellow endo sufferer who had a lap in 2013 - fortunately only had it mildly and not with any structural issues like you describe.

You have been let down by the NHS and you really can't afford to put your health and welfare in their hands. You need to hot foot yourself to a private menopause clinic to get the care you need. You are absolutely right that you need liberal amounts of progesterone to address the endo prevention and you also need a very liberal amount of estrogen to treat surgical menopause. You simply won't get adequate care on the NHS (you know that already), and you need to pay to go private. Hopefully, if your GP will cooperate, you should get the HRT on the NHS after a letter from the private clinic to your GP. (That's what I do.)

Use google and search for 'dr jerilyn prior progesterone endometriosis' - here is the link: https://cemcor.ubc.ca/ask/endometriosis-and-natural-progesterone/

You need continuous progesterone at a pretty high dose and should feel able to go up to 500mg. But you need this for more than just endo suppression - you need it because it's one of your 3 missing hormones...

As for estrogen, you should not deprive yourself of this. Endo is made worse by fluctuations in hormones, not the amount alone. If you take a stable and constant amount of estrogen) even a high-ish amount, and if you oppose it adequately with progesterone, you should be fine.

Personally, I am on 300mcg Estradot patches (that is 3x 100mcg patches) PLUS 3 pumps of Oestrogel (it was 6 pumps but I am gradually coming down to see if I can reduce slightly). I have had NO ENDO symptoms on this dose, BUT - I am taking 300mg utrogestan P orally from day 5-16 of my cycle and then adding in another 400mg (200 AM and 200PM) vaginally from day 16-26. I do bleed heavily for 2 days during my period, which is why I am seeing if I can reduce the gel - but I have zero pain or cramps during this. (Unlike when I had endo before.) Endo-wise I am symptom-free.

I would not recommend any synthetic hormones at all, including tibolone, it is no longer recommended as a substitute and your first place to go should be replacing your missing natural hormones adequately.

I see Dr Jane Robertson at the Newson Clinic and I would recommend her.

[Kathleen]

Hello Jules and welcome to the forum.

I am sorry that you have had such a difficult time.

I wonder if the Female Hormone Clinic in London would be able to help you? I think they are mainly concerned with the emotional aspects of the menopause but perhaps they would have some insights to offer. They are NHS and a GP referral is required but you have nothing to lose by mentioning this clinic to your doctor.
There is also a private hormone clinic in London which I think other ladies here have used. Both clinics offer appointments by patient portal so there is no need to travel to London.

I hope this is of some help and I wish you well.

Take care and sending hugs.

K.

[Jules01]

Thank you so much bombsh3ll, joziel and Kathleen. I wasn't even expecting a single reply, let alone the understanding you all shared. Thank you. Its so easy for the NHS to fob us off but when my last NHS male consultant said 'What do you expect, a women of your age' when I told him my bleeding was 21 days and heavy. I broke down outside the hospital and refused to ever go back.

I was worried about going private again as my consultant was adamant I didn't need progesterone anymore. He was very confident with his work but I still have pain. Not from the surgery but the same shooting pains I have had for years. I'm also worried that people will think I'm just being dramatic. Its also financially another kick.

Thank you again. I will work through your suggestions now. I refuse to be dismissed again 

[joziel]

Jules, when I didn't have enough progesterone, my endo has reared its head again on HRT. This happened earlier on, when I was just on the standard dose of either 100mg continuous or 200mg sequential - both orally. I got the same familiar pains in the same familiar places.

Since I've increased my progesterone I've been pain-free.

Here's another interesting thing.... I wear an Apple Watch. The Watch detects ovulation by finding the rise in body temp which goes with ovulation. This rise in body temp is caused by progesterone.

SO: Every month I get a Watch notification that I probably ovulated on X date. I look at my diary and it's always the date I increased the progesterone the vaginal doses (when I use 200mg AM and 200mg PM). That occurs on day 16. BUT.... I take 300mg orally from day 6-16. This is not causing the rise in body temperature.

Which is all to say... Either 300mg isn't enough to cause this, or taking it orally isn't resulting in adequate absorption of it - but I am getting the body temp change of an ovulating woman when I increased the dose. (There is no way this is me ovulating, on this dose of HRT, and at my age, every month like clockwork - always correlating with the progesterone increase!!)

The UK doesn't test progesterone because we don't have access to a reliable test for it, if you take it orally. The tests we have available are only reliable if you take it vaginally. Because orally, it is broken down into loads of progesterone metabolites which the test then registers as 'true' progesterone - when they are not. So you get falsely high results. To check that I was taking enough, I took it vaginally only for a month and I tested 2 hours after a dose. The result put me at the top of a normal luteal phase range.

The NHS isn't monitoring this at all for women. They are just stuffing women on bog standard Computer Says Whatever doses of 100mg (continuous) or 200mg (sequential) - or now 300mg if your E dose is over a certain amount. They are not testing for absorption. The NHS would collapse if they tried to monitor everyone properly like this, so you gotta do your own research and make sure you get access to what you need.

If you ever want to test your hormones yourself, use the Randox Health home 'premium' test kit - which goes on your arm/shoulder to take the blood sample. Much more reliable than finger prick and avoids contamination if you are on gel, and only about £45.

[bombsh3ll]

"consultant was adamant I didn't need progesterone anymore. He was very confident with his work but I still have pain"

That's beyond arrogant. With disease that extensive the likelihood is that some endometriotic tissue remains, and in any case who wants to take the chance when proliferation of any residual deposits could lead to significant harm and suffering?!

I have specifically used the term progestins rather than progesterone, because the synthetics are more potent in controlling endometrial proliferation, and whilst micronised progesterone is considered metabolically more favourable, this difference is small and when you are taking it to treat endometriosis so severe that it required essentially a pelvic clearance surgery this for me personally would tip the balance in favour of a progestin Vs if it is being used for uncomplicated uterine protection in HRT.

[Jules01]

Thank you Joziel. That is a great help. I have been looking into options today and completely forgot about vaginal progesterone. Silly question, but does it still work if you don't have a cervix? I also found a private place locally that does the implant, in your arm. If I had the implant would I still need a combined patch or could I go estragon only? I really don't really understand and need to do more research I think. The endo makes it so complicated and the fear of needing more surgery really scares me. Thanks again, I'm feeling more positive tonight xx

[joziel]

Really Jules, you want to avoid synthetic hormones. The only body identical form of progesterone is utrogestan. If you can't tolerate or take that then you might need something else, but really I'd give that a go to start.

I don't see why you can't take it vaginally without a cervix, since it's absorbed through the vagina. But you can always test yourself with an at-home test and see what your levels are. If you're getting levels in the luteal range, you must be absorbing it.

I would avoid the implant, it's the last thing you need. I would avoid the combined patch, which is synthetic progestin.

Really, try utrogestan vaginally to get into the luteal range on a test. (If a doctor tells you that you can't test for progesterone, or the test isn't relevant or 'we don't look at that' or whatever - that is all about oral progesterone. Vaginal progesterone can be tested for with the regular tests. Just don;t take oral at the same time when you test or you'll possibly get falsely high results.)

[Thecatlady]

Hi ive just seen this post and it resonates a lot with what im going as well. Hysterectomy and endo removal surgery, pos meno with ovarian failure anyways after surgery, at 43yrs. My gynaecologist didn’t wanted me to take progesterone at all, but my gp was very adamant that i needed it and very quickly i found that out as well.
My gynaecologist wanted me to go on tibolone, but I didn’t even try as i was struggling with the low dose HRT already so couldn’t imagine that synthetic medication would help me much.

So im on HRT, oestrogen patch, off licence dose as im still having symptoms with 100 mcg. So definitely feeling like a normal person now, or at least getting there.
So from my experience yes take the progesterone and take the HRT. I also have bladder issues due to endo stuck in there and taking vaginal estriol save my life, i use pesseries every, and my urgency as improved quite a bit, i can actually drink coffee without having to run to the toilet. Shocking thing is that no urology team has ever prescribed that to me, basically if I haven’t had the private menopause app i was still running to the toilet every 30 min with pain. Vaginal estriol is the best thing ever for bladder issues, at least for me.

Now the issue is founding the right progesterone dose, i still had endo symptoms with 200 mg micronised progesterone so they’ve put me on provera and cyclogest, but now they want me to take 10 provera . 

Its just so confusing, i still have a burning/ bloated belly, one of my endo symptoms with the 5 mg provera and the 200mg vaginal cyclogest so i guess upping the provera to 10 might be a good thing, but i feel completely off, like my head is going to blow up with the 10 mg provera.

Joziel you were describing your progesterone dose, i didn’t understand, do you take 300mg in some days and then 300 plus 400 in others? Is this through the nhs?

 I never tried more than 200 mg of micronised progesterone so i have no clue if its suits me or not. But then they say more than 200 mg it’s off license. On the other hand this provera isnt helping much as well, not to mention all the weight ive gained, i feel hungrier with this, its like im never full.
I just wanted to hear more about micronised progesterone and how it can shut up this endo of mine so i can finally have a normal life. There is such mixed information about everything so i definitely can relate to the trust issues.

Jules 01 im so sorry you have to go trough everything that you’ve been through but i hope you find clarity because we deserve better than this.

[joziel]

Did you read the link I posted above about progesterone and endo?

I take 300mg orally from day 9 and then I add in 200mg AM and another 200mg PM vaginally from days 16-26. The NHS think I am taking 300mg continuously (every day) so because I don't take any until day 9, I can take extra the rest of the month. But if you want a prescription for more, you have to go private. I go to the Newson Clinic. The NHS is inadequate and not to be trusted with your health.

[Thecatlady]

Hi Joziel I read everything you posted and i find it fascinating, the fact that in the US they do things in a different way, i found that in a different post i think. But im trying to learn and understand things better as its all a bit confusing still.

The nhs makes you believe we can only take maximum of 200 mg but there are other options, the issue is what are the other options and how to manage it.
Im happy to have found this post as people like you share this important information so thank you.
Did you ask specifically at the Newson clinic what you needed or this was advise to you by them?
Thanks for your reply!! 😊

[sheila99]

I don't have endo so don't know so much about it but I thought a conti regime was recommended for it rather than sequi?
   If you're ok on 200mg utro chances are you will be fine on more. If it's sequi and you're on a 'high' dose of oestrogen the guidelines are to use 300mg sequentially now anyway.