Pregnancy with ME

Rachels1979

Hi

I have had ME for just over 4 years and while I generally feel pretty rubbish it's not as bad as it was and I can now work part time and get on with my life as long as I take it easy and know my limits (which I still generally ignore!)

Also I had an abnormal smear at the beginning of this year, I had the loop thing done but it came back that there were more precancerous cells deeper in the tissue so had to have even more removed. They have said that it could cause problems in pregnancy but it's nothing that at the moment should stop me. At any point though if it comes back and they need to remove more then that may mean I can't carry.

Me and my OH want children pretty soon, kind of made more urgent as it's on my mind that in a few years it might not be possible.

I have spoken to my ME specialist and they are happy that there's no reason I shouldn't have children but I'm just worried about how I'll cope. I'm not after medical advice, I just wondered if anyone else has been through pregnancy with ME and how they coped with that and then looking after the child.

Thanks x

Hippychick

I don't have ME but am currently 31 weeks pg and I suffer from rheumatoid arthritis, a major side problem is fatigue so I can relate to a point.

So far my pregnancy hasn't really affected my RA, I am tired but that is to be expected, I find if I pace myself and rest when I need to I am ok. Re the baby I do worry about how I will cope when she is born but we have thought ahead and are currently preparing in advance to make life easier, ie, frozen meals prepared, spare Moses, nappy changing basket etc downstairs so I don't need to go up and down the stairs all the time etc.

Good luck, I say go for it.

lisa26_2

I acn't help with the ME bit but I can with the SMEAR treatment bit. I also had treatment, about 18 months ago, although by the sounds of it you have had more removed than me. I am now nearly 12 weeks pregnant and had my first scan yesterday. When I saw the consultant afterwards she suggested I should have an internal scan at 16 weeks to check the cervix. I think that if they find any problems then they give you a stitch in the cervix (don't fancy that much!) to help keep it strong enough as baby gets bigger.

You might like to try posting on the Trying for a baby thread on here as there is atleast one lady on there who has quite a few different medical conditions so may be able to relate to your situation more.

rachel6188

im going to ask my partners step mum for you. shes had ME for many years and has a nearly 11 year old. i have problems from adhesions and am on morphine and got told at 20 that the scarred tissue has caused alot of issues so iv got to try IVF asap and they want to do a hystorectomy if i do conceive. the longer i left it to concieve the less chance so Im seeing the fertility specialist next month. . pm me if you want to talk. rach xx

Rachels1979

Thanks everyone. Sometimes it's nice just to read similar experiences!

They had to remove a fair chunk of my cervix, I accidently saw it, it wasn't pleasant! I've just had my 6 month check up for that so waiting for the results. I'll speak to them when I've had those to see what the implications are there. I know it can cause premature labour as I have substantially less there now but I'm not sure how bad. I'm hoping that that won't be too much of a problem, then it's just the ME left to worry about!

fannyanna

Rachels1979 wrote: »

Thanks everyone. Sometimes it's nice just to read similar experiences!

They had to remove a fair chunk of my cervix, I accidently saw it, it wasn't pleasant! I've just had my 6 month check up for that so waiting for the results. I'll speak to them when I've had those to see what the implications are there. I know it can cause premature labour as I have substantially less there now but I'm not sure how bad. I'm hoping that that won't be too much of a problem, then it's just the ME left to worry about!

Hello

Yes, with regards to the treatment of your cervix the risks are in relation to pregnancy rather than trying to conceive. As you've said there is both a risk of premature labour and also late miscariiage. As someone else has said this can be mitigated by putting a stitch in the cervix to make it stronger.

I've recently had treatment and as I was in the process of trying to conceive I specifically asked about this. I was told that I wouldn't have any problems at all (although I think the area treated was smaller than with you). As you've said yourself I think it would be worth asking at your next appointment about the risks in your particular case.

I hope you get the results for your 6 month check up soon and I hope that they're clear. One thing to add (I don't mean to scaremonger) but I believe that they can only perform LLETZ 3 times. After that I believe they look at doing some form of hysterectomy. So if you do find that you need treatment again I think you definately need to have a talk with the consultant about wanting to have children.

As for the ME, no idea but hopefully someone will be able to give you some good advice x

DanE2010

Rachels1979 wrote: »

Hi

I have had ME for just over 4 years and while I generally feel pretty rubbish it's not as bad as it was and I can now work part time and get on with my life as long as I take it easy and know my limits (which I still generally ignore!)

Also I had an abnormal smear at the beginning of this year, I had the loop thing done but it came back that there were more precancerous cells deeper in the tissue so had to have even more removed. They have said that it could cause problems in pregnancy but it's nothing that at the moment should stop me. At any point though if it comes back and they need to remove more then that may mean I can't carry.

Me and my OH want children pretty soon, kind of made more urgent as it's on my mind that in a few years it might not be possible.

I have spoken to my ME specialist and they are happy that there's no reason I shouldn't have children but I'm just worried about how I'll cope. I'm not after medical advice, I just wondered if anyone else has been through pregnancy with ME and how they coped with that and then looking after the child.

Thanks x

Hiya, ive had ME ince 2005 after getting glandular fever and like yourself I manage it by working part time and knowing my limits to make sure I ont make myself worse (not an easy task!)

I had a baby 3 months ago and im a single parent and im managing so im sure with the support of your OH you'll be fine.

Some people with ME actually get better once they have had a baby, others seem to relapse. I have an old school friend who ve got back into contact with via facebook and she also has ME, she had a baby last year and she is certain having a baby helped her recover and has virtually got herself back to her pre ME self.

Me personally ive been ok but I am now starting to feel like im getting ill again, generally I had a very good pregnancy, was very tired, had really bad insomnia and morning sickness but that can be said for most other pregnant women!

I was running on adrenalin when baby was born and have been for weeks but now that is wearing off im starting to feel really tired - ME tired where no amount of sleep will make you feel refreshed and also the body aches are back along with the brain fog. Luckily ive got a very supportive family so I dnt feel like im alone in all this and if I ever got into a state where I felt I couldnt cope ive got lots of people I can turn to for help and I think that is the most important thing that you have a good support network around you to help when you have those bad days, because those bad days will always be there and on those days you will do yourself no favours trying to suffer in silence and soldier on as you know you will pay the price for it a few days later in turn making it worse!

When I found out I was pregnant it was a shock and I did worry how I would cope with the ME and a baby but I thought to myself I could wait a whole lifetime for the 'right time' to have a baby and my health could never improve, life is too short and having my baby was the best thing to ever happen to me, no matter what ME throws at me I can look at my baby and be proud of what ive achieved.

Whats your support network like? Do you have pleny of people to confide in and talk to? Thats the best advice I can offer really, make sure you have the support and you will be absolutely fine, motherhood is amazing and all women learn to cope no matter what situation they are in and im sure you will too.

oh and when your baby sleeps make sure you do too! Stuff the housework etc etc get that rest! Newborns sleep most of the day so when mine was just born I would sleep and rest as much as possible, you need that rest to recover from childbirth so take advantage of that time because the older they get the less the tend to sleep during the day apart from the odd nap (well mine does anyways!).

Hope this helps, got real foggy brain today so sorry if ive missed aything out! Anything else just ask!

Pee

I have a friend with a teenage daughter who has ME. She was sadly also recently widowed.

She didn't have any particular problems with the pregnancy. She was often very tired but she thought no more so than other pregnant friends. She had a good pregnancy BUT her husband had to do a lot of the childcare. She found working and being a mother impossible and losing her husband, which was obviously very difficult and would be for anyone, was a huge strain.

That said, her daughter is lovely and she is doing a great job of raising her.

She worries a lot about how it affects her daughter, but I think she does a great job.

Rachels1979

Don't worry fannyanna, I already knew that there could be a risk of needing a hysterectomy. I asked when I had to have the second lot of treatment what would happen if they hadn't got it all and they said that I'd need another op and they'd have to see how much cervix they could leave, and it might end up being a hysterectomy. Needless to say I was pretty worried for a few weeks till my results came through!

Thanks DanE2010 and Pee, you've really reassured me, it'll be tough but worth it! My boyfriend has just got a new job and I'll be moving with him, it's just over an hour away so my support network won't be great but it's not as if I'm in another country! They'll still be able to come and help out. I'm moving to the next village along from a friend that also has ME though and she's always been a huge support, even if it's just as a sounding board! Unfortunately the place we're moving to is only a 1 bed, but we won't be trying till next year so we'll be able to find something bigger when the time comes.

DanE, you sound like you're doing an amazing job, I just hope that I can cope half as well as you!

x

DanE2010

Rachels1979 wrote: »

Don't worry fannyanna, I already knew that there could be a risk of needing a hysterectomy. I asked when I had to have the second lot of treatment what would happen if they hadn't got it all and they said that I'd need another op and they'd have to see how much cervix they could leave, and it might end up being a hysterectomy. Needless to say I was pretty worried for a few weeks till my results came through!

Thanks DanE2010 and Pee, you've really reassured me, it'll be tough but worth it! My boyfriend has just got a new job and I'll be moving with him, it's just over an hour away so my support network won't be great but it's not as if I'm in another country! They'll still be able to come and help out. I'm moving to the next village along from a friend that also has ME though and she's always been a huge support, even if it's just as a sounding board! Unfortunately the place we're moving to is only a 1 bed, but we won't be trying till next year so we'll be able to find something bigger when the time comes.

DanE, you sound like you're doing an amazing job, I just hope that I can cope half as well as you!

x

Ah thank you, its hard work sometimes but so so rewarding its like nothing else so when your time comes take it all in and enjoy it cause they grow so fast!

That god you have got someone else with ME to talk to aswell, its good to talk to someone else who knows what your going through, as helpful as everyone else can be its never the same as someone who has gone through the same, how many times have people said to you "yeh kow what you mean im tired too" they dont mean any harm by it but they dont understand ME tired! Its not normal tired and just havin someone else who understands that does the world of good!

Good luck with it all and feel free to contact me if you ever need anything x

myonlysunshine

Hi Rachael,

I have suffered from M.E. for nearly 7 years now and have two sons, one age 17 and one 8 years old. Whilst i didnt have M.E. in both my pregnancies my condition started when my youngest was 1 years old so i still had to deal with sleepless nights teething etc!

Obviously its imperative that you listen to your doc/specialist when it comes down to the gyno problems you have had...but as far as your M.E. you cannot put your life on hold waiting for the day when you get up in the morning and its gone...i hope that doesnt sound harsh, but people with M.E. rarely make a full recovery but it sounds like you have got to a point where you are managing well and have obviously thought it through properly.

I would second the other advice about having a good support network around you, pacing, listening to your body when you need to rest (that happens with a normal pregnancy anyway!)

But what i would say is that having children is a really positive experience and i really great distraction from long term illness at times! My boys give me a reason to get out of bed in the mornings and stop feeling sorry for myself....and although i cannot charge around the park with them, we play plenty of board games at home, and they are both excellent readers..we just manage.

I wish you all the best whatever you decide.