I was wondering if anyone has any understanding on whether the contraceptive implant is OK to use with PBC? I've just read that GPs should avoid use of sex hormones for patients with PBC..... I let my nurse know about the condition when I had mine fitted and she didn't gave any concern.
Confused ...... Thanks, Em
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CheshireEm
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Hi, I think it depends on if it is a progesterone only implant, or has oestrogens. I think oestrogens need to be avoided, so the normal "pill" would be no good, but mini pill OK. I had a mirenna coil fitted, which has progesterone in it, my gp checked that is was OK for me to have, and it was. Although that is more localised, rather than systemic. Anyway in short, check what's in the implant, and then double check with Hosp Dr. You can always call the secretary to ask the question.
Hope you get it cleared up. Luckily my husband had a vasectomy, as he felt I'd done my bit!! Obviously you may not be in the same position, but if you've finished your family its an amazing quick procedure. We went to local gp I watched it being done. He only had one day off work, and weekend to recover. Brill, I highly recommend!!
Ha ha, I know men can be nervous of such things sometimes, especially about there precious places. I suppose as women we are used to getting poked and prodded by medical people, but they rarely go through that.
Also we seem to expect to have to take the burden of contraception. But all joking aside, they have developed the vasectomy procedure so much, it really is minimally invasive. No scalpel, just a tiny puncture hole, and some surgery's do it using an local anaesthetic which doesn't have to be injected, so not even a needle, which was the only bit my husband felt, and that takes seconds. It has made a big difference to us, no worries about a pregnancy which with my level of illness would not be good.
Great you have appointment today so you can get stuff clarified, take the worry away etc.
I was yold not to have the pill of any sort or the marina coil!as they weremt sure how hormones migjt make pbc worse so unless thimgs have change i think its a case of gettimg some advice from a liver consult....
I was told that the mirena was fine, as the progesterone amount is so low - also it is in situ and doesn't need to travel all around the body to reach the main target tissues. I was also told that the problem is with tablets, as they have to pass through the digestive system, enter the blood, and then be processed by the liver, which is where any damage can be done. I don't know about oestrogen - if your coil does have both (mirenas are progesterone only) - but I know that oestrogen patches are safer than tablets (the processing again) but that mirenas/coils are the only other way for progesterone to be delivered to the target tissue, as progesterone patches won't work, as prog cannot pass through the skin (that's why all these 'health shop' progesterone creams are a waste of money).
My info may be a little out-of-date, but this is what I was told about 6 years ago: first by my GP and then by my (leading) gynaecologist. I'm due to have my mirena removed.
If you are worried, ask the PBC foundation (link at the top of the page), but also check with a PBC specialist - if your consultant is a GI, or even a liver specialist but not particularly familiar with PBC (some aren't, it is still quite rare), check some 'big' PBC names. I have emailed some in the past about other matters - cold, just out of the blue - and they have been superb.
Interesting how we all are given such different information. I'm taking Bioidentical hormones and my liver specialist approved them - said they may even help. The progesterone cream I use has been very effective - no waste of money - my blood level went from barely registering to a good level quite rapidly and many symptoms improved as well. It's absorbed efficiently through the skin. Estradiol in the form of a patch is also extremely effective, and the transdermal delivery system largely bypasses the liver. Serum levels went from very low to normal range. PBC and many other autoimmune diseases often appear at ages hormone production is declining, leading to some speculation that balanced and knowledgeable replacement may benefit these conditions. Oral and/or synthetic HRT is processed through the liver and may be associated with increased cancer risks. As for the coil, it can be contraindicated in women with autoimmune conditions because we are more prone to a widespread immune system activation with the implantation of any foreign body. I hope you find a safe solution for your particular needs.
That is very interesting, Dianekjs, thanks for your post. I did say my info might be out of date!
I am particularly interested in your bombshell about progesterone cream. When I was going through all the preliminaries before having a mirena fitted, the most oft-repeated information was that progesterone could not be absorbed through the skin - hence no progesterone patches - and that I should not consider buying creams from Health Shops. I was perimenopausal, and the endometriosis that had been - more or less - controlled by the pill all my life, had become far, far worse when I had to stop taking the pill at 50. So ... I only know about the mirena, as that is progesterone only, and obviously, with endometriosis I did not need any more oestrogen!
Is your progesterone cream prescription only, or can you buy it easily? I ask because I am due to have my mirena removed, and I am dreading a recurrence of the endometriosis once it is gone. It is current policy not to replace mirenas in women who are post-menopausal, and my present GP is blithely convinced that the endo cannot return in post-menopausal women. However, that is not at all the current thinking over on the 'Endometriosis' site. It would be nice to know there is an easily available progesterone backup if my endo should recur - although I will check the 'Endo' site. Thanks.
I am in the U.S., and my gynecologist has special training in perimenopause and menopause, as well as bioidentical hormones - she is top notch, love her. She is the one who first suggested I use the progesterone cream and said that many women have great success with it. She recommended the Progest cream by Emerita, which is non-prescription and available online or in health stores. There are other brands, but this one seems to have a good reputation and I've been very happy with it. She sometimes prescribes a cream that I believe is compounded, as well. Just be sure you are getting progesterone, NOT a progestin which is not bioidentical at all, it is made from the urine of pregnant mares and synthesized in a lab. Best of luck, I'd love to get an update on your progress.
Thank you so much! I've made a note and will investigate the availability here in the UK.
I don't yet have a date for the mirena removal. The NHS here in the UK has apparently changed protocol for removals, so my GP has to check who is now allowed to do mine! I saw the original Gynae privately, but he has since retired, and I did not like his successor. Also, I'm trying to get some other health issues out of the way ... before I have yet something else done.
However, I will happily send you a progress report, once there is something to report!
What about Paragard? It's an IUD that has zero hormones. I had mine in for years (lasts up to 10!) & will have another put in in less than 2 weeks. I have another condition where hormones are harmful. Paragard has been great to have! Also no having to remember to take daily medication!
I don't think I can answer your question, but I am intrigued about the 35 years. Was the progesterone introduced in other ways? I was not offered the Mirena back in 1994 when my Endometriosis was first diagnosed: I didn't think it was available then. I guess I'm also surprised that they would just keep you on extra progesterone for that long. In the past maybe, but hasn't someone queried more recently.
By the way. If you want more answers, you will need to: either, contact the 'PBC Foundation' advisors directly, link to their website at the top of the page, with email and phone contact details there - they are lovely; or post a new question on the site. This thread is over 2 years old, and is unlikely to be visited by anyone, now. I'm only replying at you replied to my post, so I get an email to inform me.
I have had ovarian cyst issues for a few years. I have the Marina implant, have had it for over a year. Both my GI & university heptologist know of this. I had my tubes tied & burnt after my second c section so no more kiddos. The implant is specifically to help avoid the painful cysts & it has been a HUGE help. It was a painful ovarian cyst that took me to the ER when they stumbled across my ALK Phos being up in the 2000's. This led to the diagnosis of PBC.
I ALSO HAD THE MIRENA IMPLANT, BUT MY GI TOLD ME THAT I SHOULD AVOID ANY KIND OF HORMONES , SO I JUST TOOK IT OUT. I DO FEEL BETTER ACTUALLY, IF I COULD AVOID MORE DAMAGE TO THE LIVER I WILL DO IT.
Im feeling like Im really close to having a complete hysterectomy. My OBGYN didn't do anything without it being okayed by my specialist. The hysterectomy was suggested & okayed but we wanted to try this first. Unfortunately, the pain has returned when Im due for my monthly. A good note though, I haven't had to buy any feminine products since the implant, loved that partπ.
My mother had endometriosis. So, sooner or later that will most likely be in my health diagnosis. My specialists also wanted to wait till I started Ocaliva to see if I'd have any changes. My numbers are much better than they have been in the past. Best of luck to you sweetsπ
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