By Jennifer on Monday, June 05, 2000 - 04:49 pm:

Posted by Jennifer on April 14, 2000 at 16:12:44:

Hi,
I was diagnosed as having EDS several years ago. I have doubted the diagnosis for quite some time. I have the hypermobile joints but I do not have the skin involvement that is typical with EDS. I have had 2 c-sections due to failure to progress. I am pregnant again and I would like to try a trial of labor instead of having a repeat c-section. My dr. won't let me because of the EDS (that I don't think I have). He thinks that there will be an increased chance of uterine rupture. So if I really do have the EDS type III that I have been diagnosed with, do you think that there would be an increased chance of uterine rupture along the previous c section scar? If I have just the hypermobility syndrome, there shouldn't be any increased risk right? How do I convince my drs. that I don't have EDS and really have the hypermobility syndrome? Thanks for your input!

By Gwen on Monday, June 05, 2000 - 04:50 pm:

Hi Jennifer. It is possible to have EDS without having the stretchy skin. EDS is classified into six different types, according to symptoms, although it seems that within any particular category not everyone will necessarily show all the symptoms. Some may even show symptoms of another category but be predominantly one type. I was diagnosed as having HMS about ten years ago and have had two pregnancies prior to the diagnosis. My first labour was very long and eventually I was given a lumbar block and a forceps delivery. My second labour also failed to establish and I was given a shot of prostin in the perineal area to speed things up. Boy, did it ever! Four hours, wham bam, who was that masked man and baby jet propelled!
Most of the women I know with EDS/HMS seem to have had premature deliveries rather than slow labours but I can imagine there is a link between failure to establish labour and connective tissue disorders.
Have you been to see a gynecologist and discussed the options with her? Have you looked up the EDS websites, of which there are a number, to see if there is any information re pregnancy and labour on them.
Have a good day. Gwen

By Sue C. on Monday, June 05, 2000 - 04:52 pm:

I was the opposite in my thoughts... I was diagnosed with hms, but upon researching eds, I was convinced that eds was the proper label.

I'm 30 and have hypermobility. My skin would be more "fragile" than hyperextensive, as shown by stretchmarks since age 7. I also have a few side effects of eds.

When the rheumatologist agreed that I had eds last month, he asked about my childbearing status. Apparently if you are having kids or trying to, many insurance plans will pay for a set of tests to actually diagnose you and genetic counseling to follow. He said that since I'm not actively seeking pregnancy that the test and counseling would be totally out of pocket to the tune of $8-10,000!

So, ask for the testing and counseling! Then everyone will know conclusively what you have and act accordingly.

FYI: I had knee surgery 2 weeks ago and the surgeon has taken more precautions to prevent against tissue tearing, esp post-op. Recovery is a little slower, but all parties feel much safer for it.

By Gretchen on Monday, June 05, 2000 - 04:53 pm:

Dear Jennifer
I have had Hyper mobile joints since my late teens but was not diagnosed with it untill last fall. I have two boys ages 3 and 6. They were both vaginal births. For me delivery was long, but i had to be given protosin after each birth for my uterus to make my uterus continue to contract so that i would stop hemoraging. We too are debating having a third child. I was having difficulty walking and was in constant pain untill i began prolotherapy last September.

You should find a reputable Prolotherapist in your area and see what he says. This is too important not to get all your information.

Good luck and best wishes

By Lucy on Friday, June 16, 2000 - 07:50 am:

Dear Jennifer:

My understanding is that internal ruptures (accordinig to my rheumatologist), do not occur with EDS Type 111 (hypermobile type) - these are symptoms associated with Type 1V and (again, this is my understanding) the types do not cross over into each other - i.e.: you can only have one type. I am 32 and considering having children. The biggest concern my doc has is how I will actually endure the pregnancy (he says the birth should be a breeze!) - Can you let me know how your pregnancies were? I have a subluxing SI joint which is causing scoliosis (part of my EDS Type !!!), so that gives you an idea of what I'm talking about. All the best - Lucy

By Eve on Friday, June 16, 2000 - 08:55 am:

When I was pregnant 5 yrs ago, I was induced twice because of no sign of labour after 2 1/2 weeks overdue, the prostin pessarys did nothing, so I begged for a c-section, I don't know whether it's connected but my stomach is in a right state, it's a funny shape and very baggy, I'm sure my muscles and tissues etc refused to knit together again afterwards, however much I excersise my stomach stays the same, I hate it, with the terrible stretchmarks as well I feel deformed.

By Selina on Sunday, July 09, 2000 - 08:35 pm:

My son was born 3 1/2 years ago; the delivery was very quick for me- he was 4 weeks early and 6.25 lbs, so I can imagine that I would have had a harder time if he had been full term.

Let's see- I got to the hospital at 8:30 am, 4 cm dilated. Had an epidural (that worked!) because he was presenting face up (lotta back pain). Michael was born at 12:50 pm. Wham, bam for us!

I tore in two spots- the "regular" back location and a more unusual, larger frontal tear. But I healed okay- no bad pain.

Our biggest problem was that Michael had trouble following birth- he stopped breathing and remained in NICU for a few days. Then he was on an apnea monitor for 3 months after we brought him home. I felt so guilty about my epidural!!! I will try not to get one next time around- I'm convinced that it was the cause of his sluggishness at birth.

I nursed him for 2 1/2 years and had mild to severe hand pain almost the entire time. But it was worth it!

Now he is wondefully healthy, and for my personal badge of courage I have stretchmarks and a baggy tummy too (it has tightened up a little bit since I began swimming).

I hope to soon have a second pregnancy that will be as easy as my first!

By Debbe on Thursday, November 30, 2000 - 08:38 am:

My daughter just found out that she is nine weeks pregnant. She is hypermobile. Her doctor is concerned that she may have problems with her cervix because is all connective tissue. He is sending her to a specialist and concidering stitiching her cervix so it won't dilate prematurely. Also he is concerned about her ribs and hips dislocating during labor and delivery
( those have alwys been problem area for her - her ribs dislocate and she has had the ninth rib on each side removed). He wants her to think about having a c-section.

Has anyone ever had any problems either with their cervix or with dislocations during labor and delivery? My daughter is excited about the baby but also very nervous about what to expect because of all her mediacal problems.

By natasha on Monday, December 04, 2000 - 08:37 am:

i have EDS III/hypermobility syndrome.
2 babies NO stretch marks (the soft,doughy mildly stretchy skin of EDS means no stretch marks -- if you got the EDS skin you dont get stretch marks! (aside - my sister and i with EDS have very smooth skin, my sister without EDS has more wrinkles!)

anyway, baby one, long time pushing,needed pitocin, slow (but deemed "normal" for first child) had mobile epidural... he was floppy at birth and is very very hypermobile (scores about 219/9 on beighton scale...and hypotonic. EDS III/hypermobility syndrome - ahs soft, mildly stretchy doughy skin. looks exactly like me same colouring etc.

baby two, waters breaking to birth 4.5 hours, gas and air - very quick birth BUT then it was like my body gave up completely and i had to have the placenta surgically removed (not nice) no epidural for birth - no time -complete epidural block for removal of placenta....
baby two is hypermobile but not hypotonic or only mildly.


an obstetric physio can advise on best positions during birth to avoid problems of pubic pain etc after eg kneeling rather than lying flat on back debbe your daughter should see an obstetric physio who knows about hypermobility.

By Sheena on Thursday, December 07, 2000 - 07:05 am:

Natasha,
I am sorry to hear about your bad experience with the second birth, but at the same time I am excited in case I have found someone who had a similiar experience to me.

With my first baby I had an inverted uterus - the baby was born normally, but when the nurse pulled on the cord to deliver the placenta it pulled the uterus inside-out. The doctor had to push it all back into place immediately without waiting for an anaesthic, as you have a lot of blood loss and shock.

Is this anything like your experience? No-one has ever been able to explain why this happened to me.

By natasha on Friday, December 08, 2000 - 03:26 am:

sheena - wow!
havent heard of that....

in my case - they pulled on the cord and it came away from the placenta -- broke off...

i think we hypermobile people have a lot of strange things going on which must be somehow linked...

natasha

By Debbe on Friday, December 08, 2000 - 08:35 am:

Having trouble finding an obstetric physio who knows about hypermobility. Is there a listing of physcians somewhere? My daughter's present doctor is researching trying to find out all he can but admits that he has never had a patient with hypermobility before. We live in Central New York State and will be going to the prenatal center in Syracuse next week.

By heather on Sunday, December 31, 2000 - 02:07 pm:

debbe-
i have had two children who were born early and died because of problems with my cervix,my daughter was born healthy thanks to a great dr who is in england(as am i ) but told me he was going to the states he was called mr donald gibb-the best obstetrition in his field in britain.hope hes out there because i dont want to frighten anyone but my daughter wouldnt be here if he hadnt given me a high shirodkar stitch in my cervix and orded internal scans etc every week when i was pregnant. he took a biopsy of my cervix and said my collagen was not normal.this caused me to give birth early because my cervix couldnt hold the weight of a baby on its own.we have a family history of ehlers danlos type 3 and are currently seeing a geneticist.
heather

By Robyn on Sunday, October 14, 2001 - 11:39 pm:

Hi! I have just been given the label of HMS although I have had pain with joints for many years. My husband and I are currently in the process of trying to get pregnant. My doctor tells me that it is usual during pregnancy for the ligaments to get "softer". I was wondering what people's experience of this has been and if there is anything anyone can recommend to reduce or avoid problems during this period?

By Mei on Monday, October 15, 2001 - 04:02 am:

Please make sure that you are well guided by a professional if you want to get pregnant and have HMS/EDSIII. You might very well get extra problems with your joints (e.g. pelvis) but there could also be other complications, like excessive bleeding after the delivery. These problems need to be recognised in time. Your doctors should know you have HMS and preferably have seen it before. I don't have any pregnancy experience, I am just repeating what I have been told by my doctors, and what made me decide not to take the decision to have kids lightely, I am still concidering. good luck!

By Sheena on Monday, October 15, 2001 - 04:57 am:

Robyn, Yes, my joints did get looser with pregnancy. (I did not know I had HMS until about 20 years later, so did not take any special precautions). I think I went back to normal afterwards with the exception of my feet. I had always had flat feet (and a Morton's neuroma, which had not been diagnosed). After the pregnancy I needed help, went to the GP, got referred to a podiatrist who made me orthotics, which took the pain away. I stopped wearing them after a few years, but the problems came back, so I still wear orthotics and expect to need them forever! But in fact I can walk more comfortably now than I ever could before, so I don't mind.

I don't have EDS "stretchy skin", and I did not get stretch marks in either pregnancy.

By Iggie on Wednesday, November 14, 2001 - 08:39 am:

Hi,

I'm 6 months pregnant and wonder if anyone has any advice about how to cope with the next 3!

Pelvic problems started by week 6, and a diagnosis of Symphysis Pubis Dysfunction followed by 10! Gradually, as the pregnancy has progressed, the pain has spread from hips to SI, coccyx and pubic symphysis. I have a back support and body tubinet for the pelvic problems, but I am constantly exhausted.

On top of that existing affected joints are more problematic and new ones, including ribs and wrists, have joined in! The good news is my cervix is looking fine and so premature labour seems unlikely.

I wanted to work until week 37, but I am currently signed off and have been advised to go on maternity leave asap. Has anyone had similar experiences and how did they cope with/manage them?

Thanks,

Iggie

By Rosemary Small on Thursday, February 21, 2002 - 11:14 am:

My real problems stated twenty years ago when I was 5 weeks pregnant with my first child. I got up in the morning and my left hip was almost totally dislocated and unfortunately I had put all my weight on it. I spent most of that pregnancy lying down in huge pain. The only relief I got was floating in the YMCA swimming pool three times a week. Labor was 29 hours and rough. My husband and a nurse literally had to push my hips into the sockets with every major contraction. My legs cramped from toe to lower back with every push. I survived, (breathing oxygen for an hour without pushing!) My pain was worth the effort to have my wonderful son. It took me three years to rebuild my muscles. Four and a half years after the first child (everyone thought I was crazy) I had my second child. This time I made it to ten weeks before my hips went into out mode. During labor, we used accupressure over the SI joints and the hip sockets to keep the cramps away to help the muscles maintain without going into sever fatigue. (my husbands thumbs were numb for about three days after the baby was born)I sang a song over and over to distract myself from the cramping ("Tis a gift to be simple tis a gift to be free"). Fast easy delivery same long hard three year recovery. I still have joints that subluxate and dislocate head to toe, but my children and my husband are wonderful. I was finally diagnosed with EDS III type connective tissue disorder in May 2001. On pregnancy and EDS III: Knowing what I know today about coping with this condition especially the pain; I would find a good massage therapist to keep the tension balanced in your muscles and a gentle chiropractor to keep the bones lined up in your skeleton. Plan to rest flat on your back several hours a day, and swim three or four times a week. Have your delivery companion learn accupressure. Plan to allow two years to recover after birth and do that recovery under the guidance of a good physical therapist. And last: my son has some minor EDS like symptoms, My daughter is more like me. I told my Orthopedic specialist that EDS people find mates and reproduce because we are so good looking and intelligent, with a survival sense of humour. Go forth and multiply. Smile and have a good day.