What now? pcos, no ovulation, ttc and acupuncture......

[pussycatmomma]

Hi everyone, I am looking for some a)advice b)reassurance and c)kind words please.
For anyone who knows me from the ttc threads, hello, I have looked through archives but couldnt find much.
Story so far...ttc for a good while now, waiting for laparoscopy to check all ok, and meanwhile having day 3 and day 21 blood tests. Despite all the reading of v.good books,and lots of support from mn on and off I am now feeling like I am going a little crazy. The first lot of blood tests came back with Dr saying I didn't ovulate that cycle, but they would repeat them and it may have just been a one-off. I have been trying to feel a little "gung-ho", thinking, Im sure nothings wrong, I'll just wait and see and they will just tell me it is all fine and nothing to worry about. I had the bloods done again and the gyny rang me today to tell me the lh levels were very high, around 20(?) if that means anything to anyone. He said i had not ovulated again and that he felt that the high levels indicated possible polycystic ovarian syndrome. He said he couldnt be definate until i have had the lap but that if it is this he may want to do some "ovarian drilling" !! WTF i thought! After reading all i can find about pcos in a couple of hours i am confused. I am average weight i think, 10- 10.7 depending, 5.3ft, which seems to be normal weight/height. I am not excessively hairy! my periods are regular 23 -28 days at the moment, although i have had long gaps inbetween periods in the past. If it is pcos, what do i do next?? If it isnt pcos what else could be causing the high levels of hormones which are stopping me from ovulating? I asked the gyny if anything could be done meanwhile, as i wait for lap, he said not as he didnt want to give me drugs which i either do not need or which may be harmful before they have all the facts from lap. He just said to "keep trying though because sometimes miricles do happen" Great
I feel confused, unsure of what i can do to help myself, and let down again by my body. What are the chances of conception if my body wont ovulate!? Please someone give me some good advice. I also had some acupuncture last week as i was getting increasingly desperate to do anything to help. I have started taking the herbs chinese dr gave me and will advise him on this latest news when i go again. Anyone know of pcos being helped (and finally concieveing) with acupuncture? Please tell me this doesnt mean ivf[sad}
Thankyou for reading, im sorry its so long.

bump........anyone? anything? please..........

Hi PCM, so sorry you are going through this. Don't know anything myself but hopefully someone (i.e AttillatheMeerkat!) will be along soon who will.
I'm sure lots of people with pcos go on to conceive without ivf (think Posh has it doesn't she?). Wish you all the best and hope you get some good news soon. xx

thanks bobblehead,,,,,,,and i hear congrats are in order for you honeypie? I wish you all the luck in the world and a happy and healthy few months ahead....enjoy it all bobs, i hope to see you around on the threads sometimes.
Yes, its a bit of a bummer really all this isnt it? i hope i get some good advice before i log off ...

Thanks PCM I really do hope it all works out for you soon

Oh PCM, I am so sorry you are having such a shitty time of it all. I too think that Posh had PCOS and she has 3 boys, so there must be an answer. Have you tried a Google search on the subject - perhaps there is a PCOS support group or something.
I am afraid I don't have any answers either, as have no experience, but will be thinking about you and if I have time will try and do some research. Big hugs to you.

I read Posh's autobiography and she defo didn't have ivf for Brooklyn anyway just had irregular periods and slight hairiness (oh and supposedly overweight but I won't even comment on that!)

thankyou sol, thanks for your kind words. i shall probably see you on the august thread anyway...i have to go now but i shall come back on tomorrow to check for any info. I do have the toni weschler book (taking charge of your fertility) and have found some stuff on the ol' tinternet so far, but theres nothing like "chatting" to people who have gone through things or who understand first hand, or who can give you their support with benefit of hindsight is there? On the up-side of things, my sis is going for her egg collection tomorrow (ivf) so hopefully i will have some lovely news to post in a couple of weeks from her. Please PLEASE let it happen for her this time!!!!
hugs to all, xxxxx

PCM, no problem. Sleep well, and see you on the August thread soon. xx

Hi Pussycatmomma,

I have many sympathies with you - this all sounds very familiar to me as a PCOS patient.

High LH levels like yours are commonly seen in PCOSers (my LH was around 20 as well) - what usually happens is that they compare this level against that of your FSH (follicle stimulation hormone). Normally LH and FSH are the same; however, in PCOS the level of LH far exceeds that of FSH. You don't mention what you FSH was but I can guess it was far lower than your LH level.

Has an internal ultrasound scan ever been done - in PCOS the ovaries are larger than normal (walnut) size and have a characteristic ring of pearls appearance. This is the multiple cystic follicles. Some of these contain eggs, others are dormant and yet more contain hormones (they pump out LH).

The problem with PCOS (one of many) is that it is a very individualistic disorder and thus affects each woman with it very differently. We all come in different shapes and sizes!. Some women have a degree of hirsuitism (hair) and or spots that continue into adulthood; others do not. You do not have to have many symptoms in order to have PCOS - I was diagnosed with this on the basis of my irregular periods, the LH/FSH imbalance and a few stray hairs near the nipple area. I note that your periods were very irregular some time back and that would to me be an indicator of this.

I would seriously consider the possibility of ovarian diathermy (to give it its proper term) rather than a lap as this can lower the excess levels of LH in the bloodstream. It is not a cure for PCOS (there isn't one and its causes are not fully understood) but it may help restore ovulation and thus give you a better chance to conceive. I would ask the surgeon how experienced he is in doing such a procedure. You need to ask lots and lots of questions.

BTW the dye part of the lap/dye procedure can be done whilst conscious. You could have a HSG (tubal x-ray) and this will do the same job as the dye part of the lap does. You want as little surgery as possible; the last thing you need is to have a lap followed by a separate diathermy operation. I am bit concerned that this gynae cannot diagnose PCOS till he's done the lap - it can be diagnosed before then.

Verity is the UK based support group designed specifically for women with PCOS and I would urge you to visit their website. It is www.verity-pcos.org.uk.

Would also suggest you stop taking the herbs the chinese doc gave you; I would certainly be wary of taking anything that will stimulate your hormones further and possibly as a result make things worse.

As for acupuncture if it relaxes you keep doing it.

Having PCOS is not an absolute barrier to conception (I am a parent as a result of ovarian diathermy surgery) but it can be a hard journey to get there.

HTH, I will be happy to answer any further questions you may have.

Attila

AttilatheMeerkat..
Thankyou for your detailed information and advice, you have once again proved to be informative and sensitive. I would love to know what you do for a living!! If you are not a Dr/Nurse/Teacher or mentor i would be very suprised
I have had all this going around in my head today so it was lovely to come home to some info.
I feel afraid to ask the gyny all of the questions you suggest.. I know it is my body and all that, but I dont want to question his "authority" and reduce any help I may possibly recieve. This is my first foray into getting referred/getting help, after I initially went to GP for help Feb/March time. Now I am on a list for something, I dont want to risk being moved to another list and waiting longer. I wondered if they may do the hole-making/drilling procedure during the laparoscopy? Is this the only thing which can help with ovulation? I have not had any scans at all. I was also really suprised that the gyny rang me up with this info, (rather than secretary, or writing to me with info) but also that he said he didnt have my full notes with him when i asked him a couple of questions. I would have liked to see him to talk to in person before the laparoscopy to try and get to the bottom of what he thinks is wrong, what the plan is and just to give myself a bit more info, but when i spoke to the secretary prev to this (last week) she said I would not be having an appt before the laparoscopy, only afterwards. In light of what you have said, do you think I would be within my rights, as it were, to request an appt beforehand?
I feel confused. You mentioned you had the ovarian "drillng" , can i ask did you have any fertility drugs along with this??
Thankyou for any help you can give.
Hugs xxx

bump....by the way if anyone else has any info whatsover, please feel free to add, i could do with a chat!

Hi

I was tested for PCOS but blood tests were normal apart from low pregestrone levels, which means i do not ovualte

You will get pregnant loads of people with PCOS do, am suprised they are not going to scan you before you have the lap. Maybe you could go to your gp and get him to explain the procedure for you.

I was having acupunture but have stopped as it was costing a bit too much and as i have my gyne appointment on Monday i have dedcided to see what they say first, think it can help with stress though.

Sorry for rambling on, and not really given you much advice.

I'm not a fat lot of help and my words are getting all jumbled up but I know for sure that Louise (the one who's married to a famous footballer and used to be in a girl's group....Jamie Redknapp springs to mind...) had very bad PCOS and thought she'd never have children. She did....

X

Jools Oliver also has PCOS.

HI PCM,

Used to do some voluntary work for Verity some years back. Am now a SAHM to a 7 year old DS.

TBH the more questions you ask the better, do not be afraid to question things!. Knowledge is power, educate yourself re PCOS. It is your body after all we're talking about here. Am surprised also they have not done any internal u/s scans.
I would certainly ask to see him prior to any surgery you may have done. I had a procedure called ovarian diathermy; this is a procedure whereby the surgeon punctures the cystic follicles on the ovaries with the hopeful aim of bringing down the LH levels in the bloodstream and hopefully restoring ovulation. I would ask him if he plans to do anything with the ovaries i.e diathermise them during the laparoscopy.

Was not given anything like clomid as in cons words, "it would not help me" (as I had very high LH levels and as clomid encourages production of same this is the last thing I needed). Was on the waiting list for injectibles (I was treated at a NHS unit) but as the funding for this took six months to process he offered me this operation in the meantime.

Youmay want to read "PCOS A Woman's guide to polycystic ovarian syndrome" written by Collette Harris. I think she has written another book since then as well.

Jamie Redknapp's wife was diagnosed with endometriosis (another shite thing to live with, yes I have that as well!!!)and I think they've both campaigned with the NES to raise awareness of this disease.

Cor, thanks ladies, you are really encouraging me now. It does so much good to hear positive stories. Am off to do some research on line. Thankyou so far, keep them coming in .
Anyone any more words of wisdom re. acupuncture? When i go again i will tell them this news to ensure anything i am taking will not increase hormone levels. I think i wanted someone to say "yes its fabulous, just the ticket, keep going it will make all the difference!" am embarrassed to have been so naive, especially given the cost......

Hi, Everyone.
IF pcos is polyp then i had it to, my doctor gave me an D&C following my next cycle i had to recieve medication called HMG ( produces follicles)took for 8 days and 2 days befor ovulation they gave me HCG medication ( both med's are injections )HCG is o release the mature eggs the next day IUI two days in a row. sadly the first IUI didn't work for me but the doctor said because your body doesn't ovulate and the medications helping your body to make mature follicles and release them, my body will be ready for the next IUI with more % to concieving..my next IUI is Aug 8th.
I wish everyone the best of luck in concievin..