Post-pill amenorrhea success stories?

(39 Posts)
DrSocks Mon 13-May-13 19:54:55

Hoping to hear some success stories from anyone in a similar boat to myself to cheer me up. I came off the pill in September 2011 after taking it for a good 12 years and since then... nothing basically. I've had two random bleeds - I wouldn't really describe them as periods as they are so brief, plus one after a trial of progesterone (again so minimal I barely noticed). Scans all normal (so no PCOS) and I don't know the exact numbers but FSH/LH tests revealed no cause for concern.

I saw a gynaecologist in November 2012 who told me to put on some weight (my BMI was 21 at the time so I'm really not in eating disorder territory), which I have done (around half a stone, which is quite a bit for 5ft nothing!). He also told me reduce my exercise which I have also done. Maybe worth noting that I had a stress fracture in this time which almost 2 years of no periods couldn't really have helped.

I think the next step is Clomid, but have read some stuff about it not being very successful in people who don't have periods anyway. Anyone had anything similar happen to them?

tattychicken Mon 13-May-13 20:32:17

I had a similar experience but with Depo Provera injection rather than the pill. Like you, took progesterone, nothing happened. Was temping and peeing on sticks obsessively, and still wasn't ovulating nearly 2 years after coming off the jab. Took the plunge and started on a course of Clomid. Didn't ov the first month, ov'd the second month and got a lovely BFP the third month! The consultant described it as 'stimulating ovulation' which was exactly what I needed. I had my gorgeous DD2, then went on to conceive naturally twice. My experience was very positive.

MooseBeTimeForSpring Mon 13-May-13 20:43:11

Hang in there! I stopped taking the pill after 20 years. After 6 months of no periods reappearing I went to see my GP, who said, "Don't worry. Come back and see me in another three months if nothing has changed". AF appeared two days before the next appointment.

My periods were really irregular after that. So irregular in fact that I was 17 weeks pregnant before I found out smile

seasonticket Mon 13-May-13 20:59:33

That sounds really frustrating. I hope the clomid kick starts you!

DrSocks Mon 13-May-13 21:21:19

Thanks all. The gynae mentioned about the Clomid kick starting ovulation. I have almost zero breasts so he suggested that I might have generally low oestrogen and that plus years on the pill might mean I just have sleepy ovaries.

Makes me very sad to see the pack of 100 OPK sticks that are about to go out of date and the thermometer that I bought almost 2 years ago sitting in the drawer totally useless. Hope they'll be needed once I get my prescription.

tattychicken Wed 15-May-13 13:03:51

I so know that feeling. Fingers crossed the Clomid does its job. Good luck!

gwenabee85 Tue 18-Jun-13 18:44:46

I could've written this post myself before I got my unwelcome letter from the doctor this weekend! My scan was fine, nothing weird there at all so he said 'it's not pcos' then two weeks later I get another letter from him saying they've had a late result which indicates it could be pcos :/
have you started on clomid yet?

Nicknamefail Fri 28-Jun-13 15:34:34

A year for my periods to return. Now have a lovely 9 mo. good luck.

TwoMs Mon 01-Jul-13 18:19:43

Here's my story...

I stopped the pill in June 2011. Had been taking for 11years. No periods for 10 months. GP referred to gynaecologist. One week before my appointment (May 2012) my period arrived! Was told to expect to be irregular initially which they were. Now 12 weeks pregnant smile

Good luck

DianneT Sat 06-Jul-13 02:00:52

Its comforting to know that there are others in my situation.

I'm not usually one to jump into forums, but I guess I needed to vent a bit.

I stopped taking the pill in September 2012 after being on it for 3 years. Now it's July 2013, 9 months on, and I have not had a single period or bleed of any kind (except for withdrawal bleed after coming off the pill, which doesn't really count).

9 months, nothing.

At first I didn't mind, I knew my body would take time to adjust. I went to Thailand, and was grateful I didn't have to worry about getting my period :p . But then time kept ticking away and now I'm starting to really get anxious about it.

I've started checking my bbt, and its crazy all over the place, but always low (average 35.8 degrees C). My hormone levels are barely existent. Had ultrasounds, PCOS is not an issue.

I've seen a naturopath, who has put me on a few different things - so fingers crossed I get some results. I'm trying to delay clomid a little longer!

cherrycoconut Sun 07-Jul-13 22:29:44

I identify and sympathise in one go. I've had a very similar experience but have at least had a diagnosis now, albeit not something I really wanted to hear!

Have you folks had your FSH, LH and prolactin levels tested? They might be the next port of call if not?

I was also diagnosed with post pill amenorrhea. I don't want to alarm anyone unduly but it turned out it was due to premature ovarian failure age 33 grin( hope you all get something happen soon. For me the not knowing and the waiting was definitely the worst. Now looking at DEIVF options.

cherrycoconut Sun 07-Jul-13 22:30:32

Ooh, weird smiley in their, I'm not that chuffed with my diagnosis although starting to come to terms with it now....

cherrycoconut Sun 07-Jul-13 22:31:34

Never give up hope, there are always options, albeit maybe not those you thought may be on your cards!

MacaYoniandCheese Sun 07-Jul-13 22:41:01

Don't Panic! I had amenorrhea for a year after going off the pill for the first time and conceived DC1 without ever having a period. DC2 was conceived (again without a period) after 9 months post-pill and DC3 was conceived 6 months after stopping breast feeding without ever having a period. Crazy, but true. I am an avid runner and 'healthy eater' and in all instances of conception I had reverted to a sedentary, 'full-fat' lifestyle in order to get pregnant.

MacaYoniandCheese Sun 07-Jul-13 22:46:53

Cherry I'm sorry for your troubles but are your medical team absolutely certain? You know it can take a while for the pill to get out of your system and in the meantime you may not get a true baseline reading of your hormone levels? When I saw my Dr. While trying to conceive DC1 I was told I may be in premature menopause (age 25!). That obviously turned out to not be the case.

gwenabee85 Mon 08-Jul-13 10:14:02

DianneT, your situation sounds similar to mine, I had an ultrasound and they said it was all fine and clear, but a couple of weeks later I got a letter from my Dr saying some late blood results had come in suggesting it could be PCOS? apparently you don't need to have actual cysts for it to be the case? My BBT is also crazy, I'm not sure why I'm even doing it anymore to be honest.. :s have you got an appointment with a gyn?
I've got my first appointment this week so I'm trying to make a list of questions..

PoundlandClareRayner Mon 08-Jul-13 10:23:00

Hello, I am one of your success stories.

I had hypothalamic amennorhea, only discovered after it had been masked for years of being on the pill.

I was also diagnosed with premature menopause at 27 by a gynaecologist that hadn't done enough testing to be in a position to do that. I insisted on a referral to an endocrinologist who did more indepth tests over a period of time, advised on a half stone weightgain and prescribed Clomid.

After a couple of miscarriages, I had two healthy children.

PoundlandClareRayner Mon 08-Jul-13 10:50:17

oh, and if the clomid hadn't worked, there were more options on the table

All the best, and don't give up hope x

cherrycoconut Mon 08-Jul-13 19:40:13

Hi Maca, thanks for your story and support. I've seen three different consultants in the last four months who've all seperately diagnosed premature ovarian failure. I'd love to think it wasn't true but they seem pretty certain. What were your test results if you don't mind me asking?

Mine were consistently FSH +100, LH mid 50's, AMH >0.6. What other tests could be my lifeline? Thanks guys.

PoundlandClareRayner Mon 08-Jul-13 20:13:10

cherry yes, if you have had those FSH results consistently on more than three separate occasions and you are not ovulating or having periods, it does look like POF (so is absolutely devastating)

I had one occasion only where they were raised...FSH 18 and LH 11'ish (memory is hazy...this is going back nearly 20 years). When I had bloods every week for 4 weeks there was some variation with the LH and FSH seen to be fluctuating (showing that my ovaries were still capable of responding) and the oestrogen normal.

have you seen an endocrinologist, cherry ?

MacaYoniandCheese Mon 08-Jul-13 22:33:26

Hi Cherry,

I'm so sorry but I don't remember any of the numbers from the tests...DD is 11.5 so it was 12-ish years ago. I'm not expert enough to comment on your situation but I would say to not give up hope yet...I do know that the pill can really goof around with your system....I know there are lots of women who menstruate/ get pregnant a month or two after going off the pill but there are also huge numbers who take many months and sometimes a year or more to get back to normal. I also know that for me personally, the weight I feel 'comfortable' at the weight that lets me fit into my skinny jeans is not the weight that allows me to be fertile. Not saying that's the case for you, but if it helps anyone, it's probably worth it to say smile.

Hope you get some definitive answers soon flowers {{hugs}}.

cherrycoconut Tue 09-Jul-13 08:09:37

Maca and Clare thanks for your comment and support. I've seen a menopause specialist gynae and a fertility consultant specialising in endocrine problems but not a pure endocrinologist as such. My results were taken from 3 sets of bloods approx 6 weeks apart. I've also had scans showing nothing going on in the ovaries/endometrium department. I'm a normal BMI 22 kind of girl, otherwise fit and healthy.

My heart says 'prove them wrong' and my head just wants to get on and deal with what I'm being given. We're very keen to have a family and are looking at ED.

Sorry to OP for jumping your thread!

PoundlandClareRayner Tue 09-Jul-13 12:33:12

All the best, cherry. I hope you get what you wish for x

DianneT Wed 10-Jul-13 09:32:12

gwenabee85, I've been back to see the doctor since, and there has been no mention of possible PCOS

Really strange thing though, I found out my sister has been going through the same thing as me (went of the pill September, no return of her periods), and she too got a letter from the doctor after her ultrasound saying she could have PCOS.

I'm going to make an appt for a gyno tomorrow, although who knows how long it might be before I can get in. If you have any pointers on some good basic questions, I'd love to hear them ;)

I'm extra cranky at the moment too because at the same time, my cholesterol keeps getting higher and higher. So on one hand I'm being told to cut down on my fat intake to lower cholesterol, on the other I'm being told to eat more protein to improve fertility/overall health. My BMI is in the healthy weight range, so it's not like I spend my days eating cake and chocolate. AAArgh!! ... Sorry for the rant :p

Its great to hear all the success stories, thankyou for that little bit of extra hope ;)

Cookiepants Wed 10-Jul-13 09:55:38

Hi DoctorS,

I stopped the pill had no periods for 6 months (not counting withdrawal bleed). GP wasn't worried as it can take up to a year for your nethers to wake up again, but after a little gentle pushing agreed to send off some bloods. The results showed that my prolactin levels were nearly twice the upper limit of normal and therefore I wasn't OVing. I was referred to an endocrinologist (not gynae) who diagnosed a microprolactinoma ( small benign pituitary tumour ). Looking back I fell pg 1 WEEK after starting treatment (tablets) and due later this year grin. Good luck.

gwenabee85 Sat 13-Jul-13 12:51:17

DianneT, I'd bring it up with your doc just in case, can't harm! I know GPs do their best, but it seems so hit and miss as to whether they have a clue about this kind of stuff! :|

DrSocks Wed 17-Jul-13 15:49:42

Ah, I thought my thread had disappeared into the archives! Thanks so much for everyone who has shared their stories. Congrats to those who eventually got their BFP. Gwen, Diane & Cherry sorry to hear of you're going through similar. Poundland do you know what tests they did to diagnose hypothalamic amenorrhea?

My FSH, LH & Prolactin were all normal. I'm abroad for 2 months at the moment, taking a break from everything, doing no exercise and eating a helluva a lot of rice so we'll see if any of this helps. I'm going to get AMH tested when I get back and husband had sperm analysis done before we went away so hopefully will be armed with more info soon. I'd hoped to get the Clomid at the next appointment but the gynae has now said protocol is to test my tubes first. It's really annoying as I see it we should get me ovulating first and I don't really want an invasive procedure and anaesthetic when I don't think there's any indication that I have a tubal problem! Grrrrrr.

Keep in touch and let me know how you all get on.

flowersinavase Sat 20-Jul-13 13:59:48

Had 6m after coming off the pill with nothing.

(Stupid) doctor told me that I would never conceive naturally since I had polycystic ovaries (but totally normal hormones, something he conveniently forgot...). He put me on metformin which did nothing. Came off metformin and started a really clean diet, put on some weight, reduced my exercise levels. Periods came back. Fell pregnant first cycle trying with DD.

Got cancer. Had an ovary removed. Made some frozen embryos. Had two rounds of chemo. Defrosted embryos and they didn't survive. Specialist at the fertility clinic told me my AMH levels were so low as to mean menopause.

Conceived DS first month of trying (once waiting the requisite 6m post-chemo).

You cannot predict anything (and should never use the fertility clinic I did...). Best of luck.

Jayjay5 Wed 18-Sep-13 19:34:11

Have never written on a forum before but did a search for post-pill amenorrhea and thought I'd join in. It's really great to hear some of the success stories on here.

I came off the pill in January 2013 after 10 years on it in the hope of starting a family. We are now in September and still nothing. I've tried taking Agnus Caste daily as well as going to see a Chinese herbalist for a month - at a cost of £50 a week it's something I couldn't afford to keep up. Blood tests have shown normal hormone levels but I'm still worried my periods won't come back! I was regular before going on the pill but it feels like so long ago now.

I wondered if anyone had tried accupuncture? I read online that has been successful for some people. I only wish I had known about the risks of being on the pill before now! I also wondered whether people have noticed a massive increase in spots on their face?! Mine have never been so bad, even as a teenager! I wish all you ladies lots of luck and all the best in your quests. Any further tips to bring my period back would be so much appreciated!

DrSocks Wed 18-Sep-13 23:06:56

Hi Jayjay
I don't know much about acupuncture but I would push to make sure you get a scan too. The lack of periods and acne could point towards PCOS maybe?
I wish I had happy news to share but unfortunately my AMH came back low and when they looked at my bloods again it turns out my FSH was on the border between normal and high so it's looking increasingly likely that some kind of premature menopause is happening. I'm just in the process of having all my bloods repeated and starting a Clomid challenge. To add insult to injury DH sperm count was also low.
I'm pretty annoyed that I let them fob me off for a year whilst they told me to put on weight and stop exercising when all along that high FSH should have prompted them to think about menopause.
Will keep you updated anyway. Sorry for not being more positive, but read all the stuff above. Plenty of people got a BFP in your situation.

cherrycoconut Fri 27-Sep-13 08:32:09

Sorry to hear that DrSocks must be frustrating and scary to be hearing that after so many reassurances hormone levels were fine. I hope you get some answers soon. I think knowing is the first step towards dealing with stuff.

Jay I have regular acupuncture and find it really helps with my general well being and energy levels, emotional stability, the lot. It obviously couldn't 'fix' my problem but hopefully will help to put me in the best possible place for successfully carrying a child. We're now on the waiting list to be matched for DEIVF.

Congratulations flowers yup, we should all believe in miracles too! One of the reasons I've opted for HRT to control menopause symptoms is because it's not a contraceptive. If the stars align with jupiter during a full moon, well you just never know!

Lricaj Wed 09-Jul-14 03:23:46

Hi All.

I know this thread has died.. but I don't know where else to post.
I came off the pill in November 2013, after which I had one regular period, and haven't seen it since (7 months now).
I was on Yaz for 2 years but after hearing some horror stories to do with blood clots I decided to come off it.. I'm not TTC, but I definitely want children in the future. I recently had some blood tests done to check out my hormones and it turns out I have elevated androgen levels and high prolactin level... Also went for an ultrasound today to check for cysts. I'm hopeful there are none, but I highly doubt the report will be clear.. Based on some hefty internet research I have a lot of the symptoms for PCOS, but really I just want to know if I'll ever be able to conceive. I'm only 21. It really sucks that no one tells you what the pill can really do to your body. If I had known I would never have even started..

I was always regular before I went on the pill, so to be told now that I have high testosterone levels and this is stopping the process that leads to menstruation, well.. I'm pissed off. I asked the Dr if the pill has caused the change in my hormone levels and she said I could have had PCOS before even going on the pill, but if this was the case, how could I have had regular periods for 7 years? I'm so confused, I just want to feel normal!

If anyone can offer any kind of advice or ANYTHING, some hope perhaps, that would be amazing. I don't know anyone who is going through this.

Gingerbreadlady1 Wed 09-Jul-14 08:37:43

lricaj didn't want to read & run. I came off the pill (after more than 20 yrs off & on it) and for the first time had amenorrhea. Ttc & over 35 so quite quickly referred to specialist.

Despite no other symptoms diagnosed pcos. After 6months of clomid treatment my elevated prolactin was casually mentioned. This causes amenorrhea!!! Still not convinced by the pcos diagnosis (I did have cysts on scan but no other symptoms) I've just started treatment for the prolactin so fx I start ovulating naturally.

They seemed reluctant to treat this & kept pushing clomid. I'd suggest its a good starting point for your own problems.

Lricaj Wed 09-Jul-14 09:04:11

Gingerbreadlady1, thanks for responding!
I got my ultrasound results this afternoon, I have an "avascular septated cyst" on my right ovary.. its 4.4 x 3.4 x 3.7 cm in size. no idea what this means for me at this point, it's a fairly large cyst, not sure if it is something will need to be removed or.. :S..

It's so interesting that you mention the prolactin level causing amenorrhea, I also have a sneaking suspicion that it is directly linked to it (after reading a lot about other women's cases) but my Doctor at first glance said she didn't understand what link the prolactin had to missing my period and/or having elevated androgen levels.
I have an appointment to discuss the results in 2 days, hopefully that sheds some more light on the situation. I've been looking into Agnus Castus and I'm hopeful this may hold some answers....

What is the treatment they are giving you for the prolactin issue? Good luck, I hope it all works out!

Gingerbreadlady1 Wed 09-Jul-14 09:32:54

It's called norprolac. I think the prolactin thing is quite rare, my fc seemed a bit clueless! Waiting on referal to endocrinologist. I had to get drug ordered in as not one of 6 large Boots had even heard of this medication!

I too was regular before coming off pill this last time to ttc (typical) that's why not convinced of pcos. The prolactin causes your body to think you're b feeding therefore hormones go into this profile hence periods can stop. Do you have any nipple discharge? I had a teeny bit, so not the classic symptoms (sorry if tmi)

It can be caused by small (usually benign) tumour on pituitary diagnosed by MRI. Do you know what your levels are?

Lricaj Wed 09-Jul-14 12:53:19

No I haven't had any discharge, and I'm not sure what my prolactin levels are exactly I just know they were slightly elevated..
Ahhh this is so confusing.. sad

Gingerbreadlady1 Thu 10-Jul-14 07:55:25

I'd ask, I think anything above 500 can stop ovulation.

MeravFL Sat 09-Aug-14 00:39:36

Hi lricaj

My mum was diagnosed with PSOC as a teen and was also on the pill for a few years. After stopping the pill she got pregnant with me after a few months and has had 3 children since then. She was 27 when she had me, 29 when she had my sister and later on 36 with my 2nd sister and 44 with my brother. What I am trying to say is that having PCOS does not mean you can't conceive. Her doctor offered to give her hormone treatment for PCOS (I think more for the excessive body hair than anything else) but she refused as she has bad reactions to hormones. She never took any medication to treat her PCOS and was able to conceive 4 children.

When I was younger my periods were irregular. In the beginning I would have periods only a few times a year aged 14-15. I took BC when I was 18 for a short period of time (less than a yr) but stopped as I did not react well to them (Femodine). Prior to starting the pill again aged 19-20 (at first Yasmine, then after a month changed to Femodette) I had regular periods and now after stopping the pill they have somewhat disappeared:

My story is similar to yours. I was on the pill for 4 years and came off it in October 2013. I had one period 4 months later in February 2014 and since then nothing (6 months). I went to a GP about this and she knew NOTHING and told me to see my gyno - I have an appointment with her in September. I stopped the pill as I wanted to start a family with my husband, so now it is stressful that my periods have somewhat disappeared. If you want I can keep you updated with what's going on with me.

jennalmurphy1 Fri 29-Aug-14 16:20:28

I have been on depo for almost 7 years then on pill for last 2years iv been off for 4 months no withdraw bleed nevermind a period had routine bloods done and all normal doctor said I need to have rouine swabs also but had them done with smear last year and we're normal and been with my husband 6 years so I don't understand y they not offering me clomid I'm frustrated

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