Possible fertility issue

[Lucyhm88]

I’m 30 and me and my husband have been trying for our 1st for around 7 months. I have been wondering whether to go to a private clinic and pay over 1000 for fertility tests, or wait until after 12 months and see what NHS do. What worries me is that I have symptoms of endometriosis and/or fibroids but the NHS doctor said they don’t want to even do any tests. I had a trans vaginal ultrasound 2 years ago because of very heavy periods but they said they haven’t seen anything strange. And when I asked for more tests a few months ago, they said it’s too soon and even though it’s been over 1 year they don’t want to do another ultrasound. My cycle in the past year has been between 25 to 31 days, and I get lots of spotting before and after my period and blood clots and pain... and sometimes I also get pain during bowel movements. I’m not sure what it is, fibroids or endo, because I haven’t had any tests recently. Would you wait 5 more months and see what the NHS doctor does after 1 year of trying, or would you get some fertility tests right now? I was thinking of the one where they do a ultrasound scan (to check for fibroids) and also the one to check if tubes are blocked by endometriosis. My periods are very strange but the NHS doctor said because I have no bleeding between periods, it’s not enough to investigate right now. I have been tracking with BBT for a couple of months and with OPK too and it appears I ovulate but my temp is a bit on the low side, also pulse too... might be hypothyroidism too. I am just annoyed that the doctor doesn’t want to do any other tests... but I’m trying not to stress too much. What do you think I should do?

Hello, so sorry to hear of your struggles. Obviously I say all this with the caveat that I don’t know your financial situation, but I was lucky enough to be included on my Dad’s private scheme when I was diagnosed with endo in 2010, when I was 24. Before then I’d been back and forth with the NHS and nobody had looked into the pain or the irregular periods - there wasn’t the knowledge or the resource to look any further at that time in the NHS. It took a private consultant to see me and diagnose me and perform the first two laparoscopies I had. Jump to 2017 and we’re struggling to conceive after a miscarriage and I was slightly ‘pushed forward’ in the fertility queue because of my previous problems (ie, I waited ten months of ttc to be seen as opposed to a year.) They’ve all been amazing and despite the struggle the NHS is facing, I always felt well taken care of and I’ve just had my third lap. However, it is a time consuming process. From the first fertility consultation it’s taken four months to get the op and will take a further amount of time to check progress. That’s just the state of things at the moment. I would do whatever feels right - if you have the financial ability and are worried about time frames (because of age or for any other reason) then perhaps private is the way to go. If you’re willing to play a slightly longer game then I’d say the NHS can do a
fabulous job, but be prepared for a wait. I hope that helps.

It's a tough decision to make. If you wait on the NHS they will likely do ultrasounds to see whether everything looks ok and may even do the due test (can't remember what it's called) to check for blockages so you may get some answers that way.

We waited when we were ttc our dd and went my through the nhs. We were eventually told we were unexplained.

When we struggled to conceive this time around we went for private tests and finally have some answers as to what's perhaps going on.

If I had my time again I would probably go private if I could afford it as I felt it gave us some answers. Good luck.

Thank you so much for your replies. I feel so much better knowing there are others who had similar experiences. I think I will see how the next couple of months progress. I also agree that NHS is a good idea because there are many good doctors, but I worry about my age. I don’t want to waste another 6 months of good fertility time... especially if the problem is something simple like blocked Fallopian tubes. I also heard that sometimes just doing the dye Test alone unblocks your tubes if they were slightly blocked by endometriosis... but I’m not sure if that’s true. I hoped that the doctor will at least do that test but I guess they don’t want to waste NHS resources until they can be sure I definitely have a fertility problem...

If you go to your GP now you will have to lie about how long you have been trying. They won’t start investigations until you’ve been trying a year. Once they agree to doing tests they will do your day 5 and day 21 bloods (if normal 28 day cycle) then they will send your for an ultra sound. DH will be required to provide a sperm sample to the lab. If all of these come back fine then you will be referred to the fertility clinic at the hospital. There they will likely repeat the tests you had done, only then will you be considered for tests like HSG (dye test) or a hysteroscopy.

If you can afford it then I would go private after a few more months trying.

Oh god @Lucy you sound SO much like me. Except I'm in cycle 6 not 7. Hoping to god it works this round... if not I'll be asking the same questions as you. I'm 30 too.
The good thing for me is that my GP has been sympathetic and put me in for SOME tests. I suspect only because I walked in with a pile of research papers, explained why I suspected I had hypothyroidism, and explained I want to be tested specifically for that rather than infertility. Also I used to have weird periods when was on the pill so she figured I could get tests based on that. She's run a couple of blood tests but nothing seems to be drastically out of the norm so far...

Where are you based in the country? I'm thinking of ringing up a private clinic to make an appointment this week but I don't really know what I'm looking for.

How cold are your temps? Pre ov I was dropping down to 35.45 which freaked me out so I've just started temping vaginally instead which is making my temps look slightly less like I'm about to drop dead of hypothermia :/

ps I had an ultrasound last year because if my weird bleeding... all normal... But my GP told me last week that US don't necessarily pick up things like PCOS :(

I live in London so I was thinking of going to a London clinic. There’s a few that do a couples fertility check, and I found ones which also do she tests, but the dye Test is quite pricey... around 500 for just that. Fertility tests package for couple ranges in between 450-600... so it would come over 1000 for all the rests. I just have a feeling that I have something in my pelvis which shouldn’t be there like a fibroid or endo, because I also feel like I go pee a lot, and also if I try to massage that area it feels painful... I know the ultrasound I had 2 years ago was normal but if it was endo or a recently grown fibroid they wouldn’t have found it. My lowest temp was also 35.6... and also I decided to try take them vaginally instead. But it’s also that I feel cold all the time, my hands and feet get very cold, and my pulse is way too low. Adult pulse should be 60-100. For athletes it’s can go down to 40. My pulse this month has been around 54... and last month lowest it was recorded at 46.. I wear a bracelet that keeps track of my pulse and temperatures... I was also on the pill too, for around 8 years, but it’s been 4 years since I’ve been off it, so I would expect my period to not be affected anymore now. I also got cheap OPKs online and I test 2 times a day, so I know I ovulate... although I got a strange high level at the start of my period, but my ovulation was day 13 which seems normal. I don’t think I have PCOS, but endo or fibroids is a possibility, also hypothyroidism. I will have to talk DH and we’ll decide if we want to go private. I have been doing anything I can: eat healthy, try yoga, even thinking of acupuncture... I don’t know what else I can do. If we had just a couple of fertility tests like another scan and talk to a fertility specialist, at least it would help bring my stress down - even if it turns out I don’t have anything.

It’s good to remember that even an average healthy couple will generally take a year to conceive. I know it’s easier said that done but you do need to try and not worry too much right now. Completely understand that once you’ve made the decision to get pregnant you just expect it to happen immediately. Then it’s easy to worry when it doesn’t. But chances are it will happen.

Just as an aside my resting heart rate is usually 50-52 and dipped down to 38 the other night. I wouldn’t use that as an indication that there is anything wrong wih you.

Also I wanted to add, last month when my pulse was 47 I also had a very heavy period, passing large clots... as I’ve had for around 2 years, which is indicative of fibroids/endo. I wish I would just know what I have...I also feel constantly a need to pee, but no pain, but feel like something is pressing on my bladder, because I go to pee then just 1 second later it feels like I need to pee again. I have an appointment with an NHS doctor tomorrow and I don’t even know what to say. I said it’s for a bladder infection but I don’t think it’s the bladder that’s the issue... I don’t know if I want to bring up needing a pelvic ultrasound again, as last time I was just refused and told to try having children for 2 years before I come back talking about fertility issues... I guess I will just have to see what she says about my urinary incontinence, but I just feel like I’m the only one who’s concerned about this... I’m glad to have talked to you on this forum. At least I feel someone is sympathetic to my fertility symptoms.

I see. Thanks, MynameisJune. I will try not to stress out. Hopefully it can be sorted out one way or another. I am just worried because of my periods most of all. The doctor said that maybe because I was on the pill, my periods were light, then when I stopped them, I started getting heavy periods. So, heavy periods were just natural actually. But that doesn’t explain all my symptoms. If it was endo or fibroids or something else causing similar symptoms, it would: heavy periods with clots, pain, spotting, pain with bowel movements, urinary incontinence. It all suggests there’s something causing it. My doctor said that even if it’s endometriosis, they would prescribe birth control pills to control the symptoms, but since I’m trying to conceive, they can’t. So, the sooner I conceive, the sooner I can go back on birth control and stop endo from spreading. If I take a dye Test earlier and help me conceive earlier, it would help I think. I will try to weigh everything and think about it some more. Thanks everyone for your comments.

Yeh I have the cold hands and feet thing and low pulse thing too. It's true we have to remember that 7ish months is only an average but yeh it's hard not to panic. I really really hope it works out for you soon - I know exactly what you mean about stress levels and just wanting to go to a clinic to 'fix it' already, or to get some reassurance! Please do update with how you get on!

Based only on my experience - having the tests might not make you feel letter. The private fertility checks are usually just an internal ultrasound and blood tests.

When done properly, they confirm the basics (ovulation, cysts etc). They are unlikely to pick up on endo/scarring, which usually requires a laparoscopy/hysteroscopy.

You can confirm ovulation yourself through temping (opks don't confirm ovulation, only that your body is gearing up to ovulate).

Nimble knitter, you are right, but my temperatures are a bit erratic. Theres some thermal shift but because I often breathe through my mouth during the night, if I take the temp orally it turns out I have to disregard around 30-40% due to sometimes mouth being extremely cold. Last month I took them under arm and added 0.5 but it’s not supposed to be done this way, so this month I am trying vaginally. I have some kind of thermal shift but it’s erratic: going up at the start of the cycle over the median line then back down, then up again, over around 10 days, then after that I do have the higher temperatures which indicate progesterone. I talked to DH and we decided to wait 1 more month. I will try again and see what happens.

Not to mention I have some insomnia and I always wake up during the night, sometimes 3-4 times, I go to toilet, then wake up early when DH goes to work, then sleep another 2 hours. So my nights are around 4 2-hour intervals and you’re supposed to take the temperature after 4 hours of uninterrupted sleep. If I had 4 hours uninterrupted sleep I would be so happy, that temperature-taking would be the last thing on my mind! I am trying to best to sleep and take temperature properly though. Hopefully this month is it!

I just wanted to update everyone, in case it helps people with similar issues. I just kept feeling something is wrong with my period: very heavy, very strong pain/cramps, and my basal body temperature was not clearly indicating ovulation. I had an ultrasound on the NHS 1 year and 9 months ago and they said they couldnt find anything. And when I went again to the NHS doctor 6 months ago she said that trying to conceive for 6 months and my symptoms is not enough to suggest endometriosis, but even if I have it, she thinks I should wait for 2 hours while trying to conceive and then come back and she will refer me to have a laparoscopy to try to see if I have endometriosis. I just felt horrible not knowing how my fertility is, if Im ovulating or not, how serious the endometriosis is. And then I finally went to a private fertility clinic and had a simple 350 pounds scan and blood test to determine my fertility. I was shocked by the results a bit, but not completely surprised. I had very serious endometriosis and it covered both my ovaries and possibly also preventing ovulation. And my fertility level was of a woman at 40, although Im only 30. So, although I'm not going to have any treatment done at this point (we will try to conceive naturally a bit longer), Im glad I took the test and finally found out whats wrong. I suggest to anyone if they have heavy periods and very strong pain to get a test done as the disease does progress. If I had it done 3 years ago when the symptoms started, I could have maybe changed my lifestyle, not drink coffee, healthy diet, exercise, to try to improve my fertility, and maybe it wouldnt have got so serious now. But anyway endometriosis is a little understood disease so its impossible to know if it would have helped. But at least I would have had less stress knowing earlier. I hope you don't have the same thing I have and good luck in your journey on trying to conceive!

Endometriosis cannot be seen on ultrasound... I think they're having you on or just telling you what you want to hear...

To diagnose endo, you'd have to have a hysteroscopy and/or laparoscopy...

I know it can’t be seen, but a endometrial cyst on the ovary can be seen. Google “chocolate cyst”. That suggests I have it everywhere, especially since it’s on both ovaries. I don’t take just one clinics opinion though. I will go to another place and have the same thing checked again. I was also told I have very low ovarian reserve. If I have a laparoscopy it could throw me into early menopause.... a lot to think about. Anyway, more tests at a few other places for me. I was thinking too, that maybe they were lying to try to sell a more expensive treatment, but I doubt it. I didn’t even tell them anything about that I might have endo or that my periods are painful and heavy. I’ve been told by various people over 3 years: don’t worry, your periods are not that heavy/ not that painful, even if you have endo it’s mild and you can probably conceive... I know it helps to encourage someone to have faith, but in some cases it is actually very serious. I have cysts on both my ovaries... if it’s true and confirmed by other doctors then I might not even ovulate - have unruptured follicle caused by endo. It’s not only zero chance of pregnancy but the cysts might rupture / spread to other organs like intestines. I hope I’m one of the lucky ones for Whom it’s a minor thing but I have to accept that it’s also possible it’s serious...

I was just going off the fact you said they saw 'endometriosis' on US. I'm well-aware of chocolate cysts. These can be difficult to differentiate with 'normal' cysts on ultrasound as well.

I have tens of cysts on each ovary. I get it. I've been ttc for 2 years. I get the franticness - the desperation to be pregnant every month and failing - for 23 fucking months. But I think you will drive yourself insane (as I have recently done) with all this catastrophising. That's just my two pence. The most 'infertile' people sometimes concieve and the most 'textbook' healthy people sometimes don't.

Go straight to IVF - that's a choice you can make.

I'll go away now as you clearly don't want a reasoned conversation....

I’m sorry if I sounded insensitive... I am 30 and just think what I could have done different... if I could go back in time I would have a fertility checkup once a year since 25. But I try to have hope it’s still possible for me to become pregnant. I still hope they were wrong and it’s not as bad as it seems. Just so you know though, my egg count is too low for IVF. I haven’t even asked yet but from my research I will be rejected. Low egg counts mean low chances of success. I haven’t tried to conceive for longer than a year but I spent around 2 years before that talking with my partner about having children. We both wanted it strongly but he said to wait until we get married and it took 2 years... I only want to try naturally, but since that test I have a feeling it’s almost impossible for me. I have started going to the gym 2 hours every day to improve blood circulation, and have booked acupuncture too... I have no idea if any of it will work, but you’re right: we just have to keep trying our best. I wish you good luck!

Hi op,

I just wanted to share a few things which may help.

Your GP can refer you for fertility investigations and management on the nhs if you have been trying longer than 6 months and have a confirmed problem - which the chocolate cysts and likely endometriosis should qualify.

When we went to the gp for investigations it confirmed my husband had MFI and they said repeat his sample in 3 months. My FSH was high at 11.8 confirming diminished ovarian reserve but my GP coded this as normal - I went away and looked up guidelines and emailed them to her pointing out they said if fsh >9.5 then you meet criteria for early referral - she did the referral that same day and I had our first appointment at the fertility centre a month later. He listed us straight for Ivf Saying although not impossible to conceive with my husbands numbers "time was not on our side" and we should just get on with ivf.

I'm due for my first egg collection tomorrow - despite my finished ovarian reserve (confirmed by low AMH too) and likely poor response I am currently super bloated with 32 follicles growing hopefully ready for collection tomorrow (I'm 31 years old). They're now warning me about ovarian hyperstimualtion syndrome and can't believe how many follicles I have given my AMH - fingers crossed they get as many eggs as they think they might tomorrow. But don't lose hope!

Best of luck!!

P.s you may get more responses regarding tests etc on the infertility board x

Hi @Lucyhm88 just realised you said you've been told your egg count is too low for ivf - what are your numbers? I'd check your local CCG guidelines re IvF too. And your gp should refer so you can talk to nhs person too.

(My local guidelines for nhs funded ivf are fsh 5.4) x

I haven't got my AMH result yet, but my AFC result was 6, which would put me around AMH of 1.1. I've just had enough. I went to NHS two times in the last 3 years and been told things like: just wait, you have nothing, your period pain and blood is just normal, nothing came up on the ultrasound. And now I went private and I have two endometrial cysts and my ovarian reserve seems to be all eaten up. I checked online already if NHS can fund our IVF but they don't fund people with low ovarian reserve in my area - I live in north London. So, it's pretty much over for me. Unless some miracle happens. I don't know what to think really... Good luck with your IVF! It sounds like it's going well so far. I'll keep my fingers crossed for you.

My friend had an AFC of 6 and got 6 eggs at retrieval and 2 blastocysts/good quality embryos to put back. She didn't get ivf on the NHS though as they said her AMH of 4 was too low. Which is a shame as she did get eggs and at a young age they are likely to be good quality. It only takes one.

My AFC was 9 on my scan with the fertility doctor prior to treatment but I have 32 follicles after stims for IVF. You really don't know until you try - they've come up with these ways of measuring your fertility - all of them are flawed.

You need to know your AMH and FSH first and then I'd see your GP (a different one if needed) and talk to them about it- they can refer you for a discussion regardless of whether you meet the criteria (I think)

Good luck

Thank you very much for your post. It gives me some hope. My husband is japanese and we are going to a private japanese clinic today to see what they say. I just hoped we would conceive naturally. And with IVF, retrieving less than 15 eggs means very low chance of success, which is why NHS won’t fund people with low ovarian reserve. So, that’s the reason why I don’t know if it’s any point to pay for a round of IVF... I’ve read that it’s about 13% chance of success for people with severe endometriosis and Endometriomas causing low ovarian reserve... I hope my AMH is a bit higher, but I’m afraid I’ve been having endometriosis for a long time, so it’s already done a lot of damage I think. The last time I saw an NHS doctor she suggested we try for 2 years (at that point we were trying for 6 months) then get referred to a fertility expert who will do a laproscopy to check for endometriosis. At my stage now, laparoscopy is too late, as it would wipe out the last few eggs that are left. Plus the doctor had me take a rubella vaccine which again made me be 3-4 more months late in trying to conceive. I finally gave up now and went for a private check. If I had taken that advice, in 1 and a half years my egg count would be 0. I don’t know if I can really trust NHS doctors again. If I had known there was even a small chance my eggs were damaged I would have gone to a private doctor ages ago. I didn’t take time to research everything about fertility, take basal temperatures, etc. until now because I assumed everything was fine. The transvaginal ultrasound I had at the NHS 1 and a half years ago came up with everything was fine, so I just tried to convince myself it was only normal period pains... i guess the NHS are just too busy right now to advise people properly about the dangers and risks of different diseases. I know endometriosis is essentially incurable but if I knew earlier I would have tried to exercise 5 times a week to balance my hormones, eat healthier... etc. I blame myself most of all though. I feel like a fool for believing it was all fine... thanks for your advice and I’ll keep in mind if my AMH is higher and we think about IVF...