Scars in womb preventing implantation - where to get specialist private help?

[loveyogalovelife]

Just home from a hysteroscopy, bad news is that the camera found that the right hand side of my womb is all scarred, which means an egg can't implant. They couldn't scrape it off and they haven't seen it before / don't know what caused it. I'm losing faith in NHS as I've told them for 15 years there is a problem causing acute pain and dysmenorrhea in the RH side of my womb and they have never taken it seriously. I'm 43 and childless, and repeatedly having miscarriages which are devastating. DH and I are so sad and lost, desperate for help now. Can anyone recommend a private consultant? We don't know where to turn and afraid of being ripped off. No time to waste and this will stretch us financially. We also want to find out about surrogacy IVF if anyone has experience?

I definitely think you're doing the right thing. If you can, join the yahoo group (on my phone so can't link but you'll find it on google) and read the posts on there over the next few days for some reassurance from others who've been through this and been treated by Mr Lower.

yoga don’t mind answering questions at all - fire away!

We had PGS (pre implantation genetic testing) done because I had miscarried one chromosomally normal embryo (confirmed by tissue testing after the ERPC) - the problem was the soil (i.e. me) and not the seed. So for us PGS was as much of a diagnostic exercise as anything.

We had 4 frozen embryos, but we didn’t want to put back an untested embryo - because then if the cycle failed or I miscarried again, we wouldn’t know if the problem was the seed or the soil: i.e. had we cracked the uterine environment this time but the embryo was a dud, or was the seed good but the soil still wasn’t right.

That decision proved to be very apt, as the testing revealed that ALL FOUR were abnormal. So out of 5 blastocysts from that round, only 1 was normal - which I miscarried. Our frosties were all duds and could never have made a baby

Our third round had much better results. Out of 9 embryos tested, 6 out of 9 were normal!

We put one back in Sept, but that ended in an early mc, so we have 5 euploid embryos left

Surrogacy law in the UK doesn’t offer the intended parents any protection whatsoever, plus there are so few altruistic surrogates that UK organisations aren’t taking on any new intended parents. So unless you have a friend or family member, it’s almost impossible in the UK. The US allows commercial surrogacy and surrogacy friendly states allow pre-birth orders, so it’s much more feasible - however comes at a horrific financial cost (as well as emotional)

I’m appalled by your experience at the hands of your gynaes!!! I’d expect a gynae surgeon to know what Ashermans is FFS. It’s delicate surgery - excision should be done with hysteroscopic micro scissors by a specialist in minimal access surgery, which is why you want an expert like Mr Lower to resect any scarring.

Ashermans is hard to diagnose from symptoms alone, but a camera in the uterus is pretty unequivocal! There’s levels of scarring and degrees of Ashermans, Mr Lower will be able to explain more. Mine were only filmy adhesions which didn’t need resecting, and were removed with saline flushing only. My consultant said I had no formal Ashermans - but we’re treating me as if I were an AS patient, because I’ve got such a dysfunctional endometrium

I would definitely be angry, and would write a letter of complaint once you’ve seen Mr Lower and know more where you stand

I’m so sorry you’re in so much pain :(

BTW did you have a laparoscopy or just a hysto? You can’t diagnose endometriosis from a hysto alone, so I’m assuming you had a lap at some point?

Hoping you feel better soon - and so glad you're able to see Mr Lower so quickly

Thanks Bananafish. I feel so sad about the surrogate situation. It was becoming something we really thought might work for us. But my sister is 46 with young kids and a busy job; she offered but her DH not keen at all as she is always so tired and stressed and the main breadwinner; a pregnancy last thing she needs; and DH sister has had 3 caesareans so can't have more. I have another dear close friend who I love but she's 45, a smoker and struggled to give up through her 2 pregnancies 12+ years ago DH and I are both v health oriented so...

I am definitely thinking about making a complaint to the hospital. For 15 years I've been fobbed off; i had multiple scans and 2 laparoscopies but they didn't find endometriosis, so They told me the dysmenorrhea was just bad luck and had no cause; they said the pain can't be as bad as I said and "some women just have a low pain threshold" so take drugs and live with it. I hated taking the pain killers as we prefer to be drug free.

For my last miscarriage I was screaming in agony, this was on a scale much higher than my monthly and I hadn't imagined it could go that high. I was writhing on the floor in the hospital begging them to help me... they just told me to get up as the floor could carry germs; I said to them this pain is on the RH side of the womb and it's exactly the same place as the pain I get each month; do you not think it must be connected, I'm convinced there's something wrong... were they sure they had checked everything; they said, no you must have a second ectopic / unknown origin pregnancy and that's why you have the pain... I had to have morphine and other painkillers; They made me take Metatrexate a nasty abortion drug that made me feel awful;

I always knew they were wrong but no one would listen... I've had to fight to get them to investigate my miscarriages as they just said, you're just old, you're going to have bad eggs, have IVF. But I have a resting pulse of 48, low blood pressure, an amazing diet and I'm fitter and healthier than anyone we know...

yoga surrogacy is a very very difficult area, and so emotive in pretty much every way

How did you get on with Mr Lower?

I can’t believe how you’ve been fobbed off so much with your awful pain. Normally a lap would include a hysteroscopy, do you have photos from your laps, i.e. what did your uterus look like when they had a look around?

The way they dismissed your pain is infuriating, as though it’s just being a hysterical woman. Ugh!!

I find it bizarre they would say that IVF would address ageing eggs, IVF can’t improve egg quality. The only way IVF can address embryo issues is if you do PGS to identify which (if any) embryos are chromosomally normal, and only put back a good one. It’s just a selection tool however - unfortunately the older we get, the higher the % of chromosomally abnormal eggs and embryos, and thus the increased likelihood of there being no normal embryos for transfer. Sadly being in otherwise good physical health makes absolutely no difference whatsoever to egg quality - our ovaries neither know nor care whether we do yoga or eat organic, it’s a simple fact that egg quality is determined by age. Supplements like DHEA and CoQ10 (It Starts with the egg is a good guide) can help egg quality to some degree - the CHR clinic has good videos about this.

However even with a PGS normal, a good seed can’t flourish in bad soil. I’m the prime example of this - I’ve miscarried two chromosomally normal embryos because of my crap lining

I’m seeing my Dr on Monday to discuss next cycle. We’re just trying to get me to have a menstrual bleed - never mind doing an embryo transfer or trying to get pregnant, I’m on contraception with the copper IUD trying to improve my endometrium! 2 cycles of HRT have been a washout so next tactic is trying ovulation induction with some mild stims or tamoxifen to try to grow my lining with my body’s own natural hormones (as well as oestrogen patches and progesterone pessaries)

I currently look like Elmer the patchwork elephant from the HRT patches…!!

Hello, I am looking for help/advice from any women who have experienced the same as me.

I had a D and C at 12 weeks in April 2018 and since then and immediately after this I noticed a significant change in my periods which is still the case. I used to have heavy flow periods (5 days requiring super tampons and pads) and now have light periods (2-3 days only use pads).

I am pretty certain I must have Ashermans as it was directly after this procedure was done. I have been fobbed off by a few doctors not willing to investigate however and saying everything is probably ok and they wouldnt do anything until I experienced problems conceiving. I havent tried to conceive again partly because that relationship ended and partly because I'm scared of miscarriages etc.

I've booked a consultation with Mr Lower, and I'm considering getting a hysterosalpingogram done to hopefully give me more info so I can make an informed decision about what to do next.

I'd like to know what your periods were like before and after hysterocopy/divisions of scars? Did you have a healthy successful pregnancy to term afterwards? Did the scarring come back?

Thank you very much for your help in advance. I'm so depressed and worried.