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TTC for 2020, #Baby1 PCOS, Fibroids

(11 Posts)
AlreadyThere Thu 30-Jan-20 22:03:49

Hi everyone,

I know there are some threads already active but I thought I would start one to find a community of those trying for baby no 1, who either have PCOS or fibroids. I have both. A bit of background:
Age: 35 ( turning 36 in 2 months)
DH: 37

Medical history: diagnosed with PCOS in 2014, fibroids discovered April'19 and removed June 19. Only removed the ones inside. Both private doc and NHS said it's not a good idea to touch the ones outside (one 2cm the other 1cm).

Supplements: on iron supplements as my Gynae said my levels are low. Taking folic acid. Hormonal tests normal.

TTC: since September. I use clue to track my cycles (they are very irregular) and started using clear blue ovulation sticks in November.

Anyone with a similar experience? I am getting a bit impatient but my doctor said I must relax, enjoy BD and it will happen. I think because I know the other medical issues and my age, I feel my doctor should be starting to do further tests.
Is it too early to consider seeing a fertility specialist?

AttilaTheMeerkat Sat 01-Feb-20 10:23:10

OPKs are completely useless to use with PCOS; infact IIRC it actually states on the packet not to use if PCOS is present. These kits measure the levels of LH; if such levels are elevated to begin with (which is often the case with PCOS) then the kit reads this result.

I doubt very much that your hormone levels are at all normal.
What hormone tests have been done to date and on what cycle days? Tests being done on the "wrong" days give meaningless results.

Your doctor is giving you duff info to my mind re now telling you to relax, enjoy sex and it will happen. It likely won't. You need treatment re the PCOS (what has been done to address this?) because this is a condition that does not go away on its own. I would certainly consider seeing a fertility specialist now and your history warrants further such testing. Such problems are well outside a GPs remit in any case, you need a second opinion.

AlreadyThere Sat 01-Feb-20 13:29:31

@Attila thanks for your reply. It's a Gynae/Obgny I have been seeing. Nothing has been done with the PCOS but I am on a low carb diet now to lose a couple of kilos. The hormone tests were done on day 2 or 3 of my period, can't remember the exact day.
And I agree with you. Yesterday I saw my Gynae again and she is of the view that I am impatient with all these tests I want done. That she would normally refer to a specialist only after a year of trying. So I gave up on her and have now made an appointment with a specialist for this coming week.

I would rather do the tests and know what is going on whilst I try, instead of just living on hope when I am aware of some of the issues already.

Thanks xoxo

MOGMOGMOG85 Mon 03-Feb-20 20:34:25

Hi @AlreadyThere,

Nice to meet you - I feel like we're in a similar boat in some ways. I'm 34 going on 35 and trying for my first. I've been ttc 21 months now. I have been pregnant once after 16 months trying but unfortunately had a missed miscarriage at 11 weeks (embryo 6 weeks which is a very very common time to miscarry).

I have large fibroids which I think affect my ability to implant and hence it taking so long. Mine are much larger than yours, around 5-7cm. If I were you I wouldn't worry about 1-2cm ones, they sound small. I know it sounds scary but I've been reassured by everyone that its very common to have fibroids, and I've seen so many positive stories about women having babies with far larger than my ones - yours don't even qualify as large! It sounds like you had removed the pertinent ones that might have impacted on your fertility and as far as I can tell the other ones might just make it a bit more difficult but not impossible. As you say I think surgery is more risky than its worth for some fibroids - I know with mine they said it would be major surgery and risk major complications to my fertility. At the moment I've decided I wouldn't want them operated on unless they were causing total infertility (which fingers crossed after a successful implantation 5 months ago they aren't...).

About the PCOS I'm less aware, but I don't think that's something that your doctor should be ignoring. I have a friend with PCOS who had great success with Agnus Castus... and apart from that there are medications they can give you which I think have a high success rate. In a way the PCOS is sort of easier to deal with because there is something you can do about that one.

Although it gets my goat when the drs say "relax" in terms of the amount of time you've been trying I'd give it a few more months at least. I think 6 months is the rule if over 35?

In terms of enjoying the BD good luck with that! After 21 months I find it so stressful and difficult to get in the mood - I'm lucky that my partner works like clockwork, and although I am getting better at relaxing and enjoying it sometimes, definitely not often sadly sad if it helps I don't remember enjoying it much when we did conceive so a part of me thinks that part is great if you can do it but don't stress too much otherwise you'll just make it worse! After seeing a few positive stories on here I've just ordered some preseed to try next month - I figure it will take the pressure off me and hopefully help me relax and enjoy myself more, and it will give some extra stuff for the sperm to swim through and maybe help them along!

Hope that's not tmi just wanted to say hi and it's nice to hear from others in similar situations smile

AlreadyThere Tue 18-Feb-20 20:52:30

Hey there ladies @MOGMOGMOG85 @AttilaTheMeerkat

Update. Went to get checked again two weeks ago (went to see fertility specialists this time around) and turns out the fibroids are bigger than what we thought, including some inside the uterine cavity. Specialist advise that as they currently stand they are likely to impact implantation and the growth of the baby and present some complications. Suggest the less invasive keyhole myomectomy. So I ended up opting for surgery. Did the laparoscopy surgery yesterday and they removed several fibroids including big ones the size of a peach/lemon inside the uterus.

I will now wait to heal (minimum 3 months) before TTC again. At least now I am confident there isn't anything else I need to manage except the PCOS.

@AttilaTheMeerkat thanks for the advise. Fertility specialist did order some hormonal tests and I am now on estrofem and will incorporate provera later on. He has advised on managing my weight to alleviate the PCOS symptoms. I am glad I decided to go straight to a specialist, I could have wasted a few more months when there were issues to solve.

@MOGMOGMOG85 hope the preseed works for you and all the best of luck!

MOGMOGMOG85 Thu 20-Feb-20 17:33:21

Hi there!

I hope your recovery is going well?

That's crazy that there were a load more they didn't even know about??

I had a scan this last weekend and found it reassuring. I have 3 large ones, although my gyno told me he classifies them as medium (between 5 and 10cm). Mine are all 5cm-5.5cm. Potentially 2 small ones but not sure. Of the 3 large ones she said one is pedunculate on the outside of the womb, and I have one on either side of my womb but not interrupting the lining of the endometrium. She called them sub something but I can't remember what - either submucosal or subserosal!!! I googled it when I got back and it looks like submucosal do affect fertility so I hope it's not that... I am awaiting a gyno app to explain it all to me.

It's my time to ttc now and I'm trying out positive visualisation this month. The ultrasound tech said my ovaries were perfect, and my endometrium was good and smooth. I'm repeating these words to myself and trying to picture my womb as a good place for a baby to grow. I obviously don't believe it will help me actually conceive but it may help my stress levels which might help!

Best of luck to you too - let me know how it goes. It does seem like we're in a similar kind of position re: delay in conception etc

xxxx

Hope06 Thu 20-Feb-20 17:43:13

I have PCOS but only on one side apparently.
Up until September last year I had almost no progesterone to speak of, and then we got pregnant and had a silent miscarriage at 9 weeks.
I had no treatment, other than loosing a lot of weight by seeing an NHS dietitian.
I now have a 2 week old DD also naturally conceived.
No one knows why my hormone levels normalised, they can only say that it must be the weight loss.
Sorry there’s not much advice here, but thought I would share anyway.

AlreadyThere Thu 20-Feb-20 20:12:32

@MOGMOGMOG85 good to hear from you and thank you for positive thoughts. It is quite common for doctors to see a certain number of fibroids in the scans and discover more during the procedure. Recovery has been a bit hard (I guess I was also comparing it with my recovery from hysteroscopy a few months ago). It's day 4 and only today am I feeling like I can lmove around more freely. I can even sit upright today, which a huge relief!

Great that you received some more info during your scan. I would not worry much about the one pedunculated on the outside of the uterus, but those within the wall of the uterus as well as those inside may cause problems. Your Gynae will explain better I guess. Are they symptomatic? Mine caused heavy bleeding and pain, which is why I had to deal with them. I am actually a bit disappointed I agreed with my doctor back in June '19 not to remove the ones on the walls and just remove inside. After seeing the video footage of my keyhole surgery this past Monday, I can just see how they needed to be removed. One was lodged right within the walls and of a medium size, whilst the other was outside although about 30-40% of it was within the wall and very close to the tubes. I wish I did not choose a less invasive procedure and just dealt with them back then. Many people have had pretty normal pregnancies with fibroids but I wanted to give myself the best chance. Maybe it's because they were distorting the endometrium lining, and yours are not.
Good luck with TTC, will be thinking of you and trying to incorporate some of those positive thoughts into my routine too. 2020 is the year it happens for us, I can feel it!! 

@Hope06 thanks for weighing in. I have heard great stories about the effect of weight loss on PCOS. My fertility specialist said it's the only thing I can do to manage it- eat healthy, exercise and lose those extra kilos.
Congratulations on your DD, it gives people like me hope to know miracles do happen all the time. smile

Hope06 Thu 20-Feb-20 20:18:51

I waited 6 years for her to happen!

AlreadyThere Fri 21-Feb-20 23:05:59

So sorry to hear that. It must have been a difficult journey @Hope06 🙏🏽🙏🏽
Thanks for sharing, gives some of us who have less than a year trying perspective and some realistic expectations, while also giving us hope for the future. ❣️

AlreadyThere Wed 22-Apr-20 23:51:51

Hi all,

How is everyone holding up.

Update: went for my 4 week scan a few weeks ago and received some good news. I am healing very well.
I was surprised to see on the video of the surgery that they also removed some endometriosis. What fresh hell? To have PCOS, fibroids and endometriosis all at once is just wild to me.

I am glad the surgery revealed the endo because otherwise we would not have known. Fertility specialist insists I must consider IVF ASAP ( I turned 36 two weeks ago).

We have agreed to go ahead with it, I don't think I can wait and have the fibroids re- grow. Unfortunately these lockdowns mean we will have to delay by a few more months 😢

How is everyone doing?

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