Coping in pregnancy with HMS - general

[Cianninn]

Lianne,

Ouch! I've heard a laparoscopy can be a ......to recover from. Hope you are ok now and that the docs can find out what's causing your pains. I actually had my diagnosis done privately through my OH's medical insurance which was lucky. At the time I knew I was seeing specialists in the field but had no idea they were so famous! (Prof. Grahame diagnosed me and Rosemary Keer was my physio). I tell you just having that on my file and the letter he wrote to me afterwards has helped my case with the medical profession no end.

Are you scoring on the Beighton/Brighton criteria at all? Why does your doc think you don't have it?

[flyingfairy]

I think it is just being scared of the unknown. And also i had alot of trouble trying to get it diagonised i hated being past around from one doctor to another. And also being scared that my child will be born with HMS. And also weither my partner would be able to cope with 2 people

[kezzykat]

Please don't let the bad stories put you off, think of them as information to arm yourself with in case you suffer problems - at least you'll know why, and know what help to ask for! As for the doctors at the hospital not knowing anything about HMS, that's altogether possible, however, if you discuss it with your consultant during your pregnancy, you can make sure that extensive notes would be included with your set of notes so that the on duty staff could quickly be brought up to date.

I suffered with probems with my tendons and ligaments as a adult, but my main problems had been as a child until I got pregnant. Then all hell broke loose. I developed diastasis symphysis pubis which of course is really all part of the laxity and dislocated my hip and fractured my ribs with my first delivery. On the mini pill I got pregnant with my second baby even though I was told that my just finishing brest feeding my son at 8 months old would protect me (I was no fool tho so i didn't believe that..but I DID believe the line about my Thyroid which also died with my pregnancy making my body more difficult to get pregnant..).

My second pregnancy saw my Autoimmune thyroid disease and severe DSP and general pelvic and hip laxity which had not gone better get worse and I have generally deteriorated since then..

I am at the point where before kids I was relatively ok...now I am a crip..I have no sensation in my left leg ? spinal sord compression from the movement of my spinal vertebrae. I use a wheelchair full time etc..I have all my major joints daily subluxateing and dislocating....hip did on every step when I could walk..I have other issues too ....

but I would do it again in a heart beat for my kids..

and looks like they are HM...but HOPEFULLY NOT HMS..and I will do all I can to prevent the pain and disability for them..Of course I didn;t know i had a genetic connective tissue disorder, but with my secnd baby I DID know I had AUTOIMMUNE THYROID DISEASE...

Also it could have swung the other way and I could have been absolutely wonderfully health wise..it is a gamble you take and unfortunaately pregnancy is a battle..

i think nowadys we tend to see pregnancy as such a controlled, medically carried out procedure, but it is a nature occurance and as such it is fraught with risk and I feel that you have to be responsible as you are doing and weigh up the risks which may happen or could happen and then what or how you would deal with it and take the plunge or not...

The Drs and midwives when I delivered my children knew nothing of my HMS/EDS as we didn't..They did know of my SPD/DSP and to be honest few of them could handle the information of how to treat that which is a fairly common occurance. I found that i had to photocopy and take in information for my file and the file I carried and keep it concise about best position for labour for the pelvis to assist babies head (which would be the same for HMS/EDS as in DSP as principle is the same to do with pelvic laxity) and is Left lateral and about how epidurals never worked on me the 1st delivery (which no one believed and had to prove again the second time around and then all believed ...lol ...now of course we know why...

So taking these such steps, like a woman with any long term conditon would do, having regular care, keeping in contact with a midwife you trust a Physio with HMS knowledge would be able to treat Obs/gyn but I am not sure an Ob/gyn would be able to treat an HMS..etc....


When the baby is here, you do forget the pain, they do make and revolve your world..

my youngest child will be two at the end of the year. my eldest is 3.5 years. It is hard. It is magical.

I wish you all well

K

[LianneS]

Lianne,

Ouch! I've heard a laparoscopy can be a ......to recover from. Hope you are ok now and that the docs can find out what's causing your pains.

Are you scoring on the Beighton/Brighton criteria at all? Why does your doc think you don't have it?

The recovery was actually not too bad for the laparoscopy, I had 2 weeks off work as thats standard, though I did try going back after a week, did one day then realised I was pushing myself far too much!!

I only score about 4 on the beighton/brighton criteria... To be honest I dont think the dr trully understands, he admitted I am more flexible than some people, but he decided my back pain was due to a collagen deficiency (as I have some very thin stretchmarks on the base of my back) but even that really is related to HMS.

Ive started doing my pelvic floor exercises in preperation for having a baby at least!!

[flyingfairy]

These sorts of stories are what are putting me off. I would love to have children i don't see my life with out children but it scars me.

[kezzykat]

These sorts of stories are what are putting me off. I would love to have children i don't see my life with out children but it scars me.

That is not my intention honey But I do believe it is crucial to have INFORMED choices..it is your right. That way you are better armed and able to cope with every scenario which may (or may not!) raise its head. PM me and we can chat if you so wish to elaborate further. If not, and anyways, I wish you well

KezzyKat

Ps, Please remember I am in a very small minority (so I have been told) who are very severely affected with HMS/EDS with overlaps into the other EDS groups as opposed to plain ol' HMS, so all this has bearings on the bigger picture too. I feel for you and yet I can not keep quiet and not say what happend to me and let you go in blind when you asked for information. I hope you understand.

[Cianninn]

Kezzy thank you for your post. It is scary reading what could (not will!) go wrong during pregnancy but I feel much better knowing these things. As you say, at least you are making an informed decision and not going into it blinkered. You are also better prepared if things do go wrong, to at least know other HMS sufferers have gone through it and what actions to take.

FlyingFairy, HMS is so variable you can't say for sure how it could manifest in your children (if it does at all). Even if your children do inherit it they may not actually suffer with it. I have about half the family on my mothers' side affected with HMS and they all have it in varying degrees. Mostly it is mild joint aches and pains with only two family members needing walking aids. I think I got off lightly as my mother suffers badly but I only get aches in my knee & hips from time to time. If I wasn't an amputee (not related to HMS) I have a feeling my knee would be a lot better.

[Alison C]

Hello!

My two pregnancy stories! They may seem rather dramatic when reading them but please these are happy stories.

Pregnancy no 1 - all OK however felt more hypermobile (esp jaw kept subluxing more than usual once the pregnancy relaxin had kicked in at week 13). Thomas (baby - now 7 yrs old!) presented as breech (flexed ie knees bent so would have had to push feet and bottom out at the same time) and hypertension happened at week 37 so had Caesarean at week 38. I had symphasis pubis dysfunction - painful when sitting down or opening legs - for about a year afterwards - due to stretched pelvic ligament. Had hydrotherapy when 9 months post natal and this really helped me to tone up and to sort out the s p dysfunction. Thomas was a floppy baby and he has HMS - he can now run about and have lots of fun - you would not necessarily guess he was so floppy earlier.

Pregnancy no 2 - all OK again - felt stronger this time round - jaw again went loose after week 13! By the time of this pregnancy, I had the HMS diagnosis so had extra care ie physio during pregancy (eg hydro, exercises, frequent midwife visits, cardio visits). Hypertension did happen again (but I do not think this is HMS linked) later in pregnancy. Emily was born by planned Caesarean as obs/gyne felt there may be a risk of tissue damage/prolapse if I pushed. Emily (now 15 mths) has HMS but is not as floppy as Thomas was. I did not have s p dysfunction this time round and physio has not been needed postnatally since a few months after the birth. Physio thinks the second pregancy has strengthened me! I suspect there is something to do with hormones and also having had physio during pregnancy.

15 mths on after Emily's arrival, I am doing well. Getting somewhat bruised by her clinging onto me as she stands! I am busy dashing off to do the school run, and am able to do the week's shop however do try to pace myself (that awful word! ). I do take Emily to some baby groups - music, soft play, mums/toddlers - we all have fun! I do not use walking aids however do enjoy resting on the Maclaren buggy (light weight) and use the car more than most people do.

I have recovered more quickly from the second pregnancy. Waterworks are needing me to do my pelvic floor exercises as I do have very light weight leaks. Bowels are OK!

I am not supermum but am enjoying my two children - we have lots of laughs and have the other symptom of HMS - a great sense of humour!

Everyone is different with their pregnancies - I have no doubts about having had the two pregnancies and I am thrilled to bits to have my two children.

Perhaps you could ask your GP to refer you to obs/gyne for a pre-pregnancy assessment. I had this before my second pregnancy just to go over things as I knew then I had HMS, unlike before. You can then discuss your needs and any concerns.

You have so much to think about and I hope to have given you a positive picture.
Cheerio
Alison

[kezzykat]

Hello!

Emily was born by planned Caesarean as obs/gyne felt there may be a risk of tissue damage/prolapse if I pushed.

Thanks for posting that Alison C,

i think this above quote is the clincher. I am adamant that both my deliveries of 8+ pound babies..I am not a tall , nor am I a well built woman, (first one posterior) created the severity of my situation today. Well the situation speaks for itself I dislocated my hip and dislocated/fractured my ribs at my first delivery...

However I was not diagnosed with HMS/EDS even with my second pregnancy, and had the SPD/DSP label, which in itself is enough to make some consultants offer c-sections.

My obgyn did feel my DSP/SPD was severe but was concerned that as I had a baby at home already that any c-section would be hard for mye recovery wise and that cutting thru accessory muscles would make my recovery harder.

In hindsight, I wish I had had a c-section with my FIRST baby..

As the ladies asking the questions here are mostly diagnosed, I am hoping that they will share your positive outcomes

thank you for sharing

KezzyKat

[Alison C]

Hello

Following Kezzykats message - my Caesareans were OK.

First Caesarean, the scar turned keyloid (lumpy) and was red for quite a while (I can't remember now!) but it later turned flat and white. It was rather painful after the op for a week or so, moving around etc and pushing the first post-natal poo (sorry to be so basic! ).

Second Caesarean, scar was OK ie no keyloid however this time round, the obs/gyne did the stitching knowing that I had stretchy skin! The internal stitches would have lasted 90 days I think and I had disolving outer stitches - unlike before. Second time round, I was not a super hero and asked for as much pain relief as possible! This helped me move around. I also asked for Lactulose - insisting I had this to take home! - it is a laxative - so I had no problems with the first post-natal poo! I did have quite a bit of post natal bleeding which was cleared up by strong antibiotics. I have forgotten this but I did bleed heavily too after the first pregnancy for 8 weeks - this is not normal.

On a plus side, having stretchy skin means I have no stretch marks! My skin was able to stretch during the pregnancy and therefore did not have any damage in adjusting to the ever increasing bump!

Oh yes, husband nearly went green during first op but was OK with the second! When asked what music we would like for the second Caesarean (this was not offered with the first), husband suggested something "relaxing, classical" however I piped up "whatever the surgeons would like!" so we had hip hop down-town cafe/bar music! Not sure what impact this will have had on Emily! It is amazing to talk to the surgeons during the op "How is everything down there?" and to get a running commentary and then to listen to their chat about this and that! I had a great anaethetist on both occasions - first one said "don't let the little lad rule you!" (this is yet to be put into practice! ) and the second was on loan from Greece (even tho I had met the cons anaethetist earlier in pregnancy to discuss HMS and lignocaine/epidurals etc - btw I had a spinal block which really worked for me - lots of anesthesia!, she could nto find the notes!) and we had a good chat just before the op re HMS/anaesthesia in a bit of stilted English, and she was so lovely - she even burst into tears when Emily was born (at first I thought something had gone wrong then realised that it was the emotion of it all!). Everyone was great during the op - you get lots of staff - approx 8 or so in the room - all keen to help! Quite a clinical setting but reassuring! And the music was great!

Cheerio
Alison

[kezzykat]

Hello

Following Kezzykats message - my Caesareans were OK.

Hello Alison C

Thank you for posting this information As a RN I was pretty adamant that the Obgyn excuses were unfounded and he was trying to lower the trusts c-section rates. It is helpful for the posters to have your experiences to support this!

I should have made it clear that I do not agree with the viewpoint that a c-section was more difficult for me in my circumstances to recover from..lets face it, I am 3 years postnatal from babyno 1 and 21 months from baby no2 and I am finding it difficult to imagine how a c-csection could have complicated things further

LOL

Thanks for clearing that up Alison

KezzyKat

[LianneS]

I had ever thought about C section unless it was an emergency, do you think I should say something to the drs to see if I should have one as an option.....

I must say I dont like the thought of them, my HMS isnt that severe though so do people think I would be ok (as long as everything else is) to have a 'normal' pushing birth?

Lianne

[nonyanomemory]

Hi, I was undiagnosed when I had my children. Now teenagers, so bear with me as memories get sweeter over time I was not one of those who had an extremely quick labour, but one whose muscles were weak and despite trying spent a long time getting nowhere. I did have symphis pubis (sp) problems which were commented on and particularly after the birth of my second child my hms symptoms accelerated, as is often the case with hms/eds a change in lifestyle and or extra daily tasks can make what was once something I just put up with if you like, something that became unmanageable (for a while) Everybody is different and as long as those responsible for your care in pregnancy are aware of the condition, just because one person had a C section this may not be the right way for all and vice versa.

A word of warning to any HEDSer out there who may have had problems with LOCAL ANASTHETICS if you need an episiotomy (stitches) please make them aware that you may respond differently or do not respond at all or may need more than usual. I was labelled hysteric because I made more fuss about the stitching which wasn't many! as it seemed more painful than the labout itself! When I eventually had a referral to Professor G years later he explained that I was not being hysterical the local anasthesia had not worked.

Despite the fact that one of my children has pretty severe EDS, I would not change anything for the world and she wouldn't either. It turns out we have more than one hereditary condition in our family the other being neurological, so even if I had known, in hindsight, I would change nothing. My kids I think are stronger emotionally and whilst there are days I feel sad to see them in pain or similar, I thank god that they have there diagnosis', so that they at least with our help can put into place some of the more preventative measures which I was unable to do.

It is possible to have genetic counselling and for anyone who is in two minds this may be helpful.

Hope this helps. nonya

[flyingfairy]

Thanks for all of your messages. I actually have Ehlers Danlos Syndrome. I know what you mean about it not always showing up it was my mum who gave me this appartently so the Prof said. It wasn't actually until we sat down with him that we released that she could actually do alot of the tests. But fortunately it doesn't bother her. Thank you for sharing your stories with me. I have to say i am more scared of the unknown and my child having EDS. I think if you decided that you want children they you take your chance.

[flyingfairy]

I do suffer really bad with my EDS on a daily basis. All my joints disolcate including jaw,knees, hips and shoulders etc. I am in a lot of pain on a daily basis which you learn to live with. One day i can't walk the next i can't use my hands. I would just hate the thought of my child suffering like i have to on a daily basis. And also my partner having to look after use both. Not only that but i would be scared of not being able to look after my child.