How do I manage endo after pregnancy? - Endometriosis UK

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How do I manage endo after pregnancy?

MrsClaireBear profile image
7 Replies

Hi ladies

After years of having my symptoms ignored (like almost all of you I imagine) I finally had a laparoscopy in September and was dispagnosed with endometriosis. Then had a few months getting my head around this and in January the impossible happened and I fell pregnant with my first baby which is amazing.

Due date is in two weeks and am now thinking about how I manage symptoms after she gets here. I know doctors will say all will magically be ok once I've given birth but I know that this is not always the case and I was after some advice.

During my many years of bring fobbed off I must have tried every pill on the market, all of which made thing better for a few months but then eventually I was always back with the pain, nausea, headaches and mood all over the place. I also tried the IUD fora year which turned off my periods - along with everything else. I ended up on HRT as my hormones were messed up and then antidepressants for two years. This then led to more than two years of no contraception at all but no baby until the lap.

So clearly I'm a bit scared about what to do next! Will a different contraceptive help? What can I do for pain? Will breast feeding help?

Any thoughts extremely gratefully received xxx

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MrsClaireBear
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7 Replies
KatieTattie profile image
KatieTattie

Hi congratulations on your pregnancy! I had pain for years with no idea the problem was endo, was told I had IBS. I was only diagnosed a month or so ago. I was lucky and got pregnant straight away 4 years ago and I have a lovely very lively 3 year old boy! All of my symptoms disappeared when I was pregnant, I only breastfed for a few weeks.. 4 weeks after when my baby was 6 weeks old all my pains came back worse than ever.

It has been 3 years of torture not knowing what was wrong and trying to look after a baby who wasn't the best sleeper/ eater etc! Now I know what the problem is if and when I have another baby I would do things differently.

Firstly I would try and breast feed for much longer to hopefully prevent ovulation for as long as poss to give my body a chance to heal from birth/ upheaval/ sleepless nights etc.

I would have also stayed with my mum for a month or so.. I'm sure some babies are easy.. Mine wasn't! I insisted I could do it all, look after baby, cook, clean, walk dog etc on 3 hours sleep a night ( what a fool eh!) so if you can get help!

The other thing I would have done had I known it was endo would be to have the number of my closest endo specialist on speed dial! If you start having symptoms after you stop breast feeding or before call straight away and get an appointment with someone who knows what they are on about. From what I gather exision is the only way of ridding endo so if you can try and arrange an appointment with the intention of having this carried out. If it means saving money/ borrowing if it works which I've heard a lot of positive stories on hear that it does then try and get the money. The last thing I want is for you to go through what I did, I did not enjoy my baby due to this horrible disease. I am not telling you this to frighten you, I really hope I haven't! Just get prepared just in case. However you may be fine!!

Good luck with the birth! You will find it a breeze after having endo pain before!! Xx

MrsClaireBear profile image
MrsClaireBear in reply to KatieTattie

Thank you so much Katie

I'm sorry things were so crappy for you. I guess my furs job is finding an expert! After my lap I had no aftercare at all and the only help I got was from this forum. I guess it's time to start shouting for help again!

Thanks again xx

KatieTattie profile image
KatieTattie in reply to MrsClaireBear

Yep find nearest/ best specialist (sure people can help on here) and also maybe book in with your GP before baby comes and explain that you expect to be given all the pain relief you can and possibly you will want a referral. If you get this straightened out before hand you wont be going through all the faff of convincing people to do things.

Regarding baby.. Take what everyone says with a punch of salt, they all think they know best but what they know is their OWN baby NOT everyone else's. Do what you feel is right, don't try n be perfect.. Believe me no one with thank you for it!! Wishing you all the luck in the world, and I really hope you have no symptoms and enjoy the cuddly baby stage!! Xx

Impatient profile image
Impatient

Your endo will not wake up till you are ovulating again- and breast feeding is the best 1st point of attack as that should keep on triggering the right hormones to stop you growing a new menstrual lining and ovulating too soon. Doesn't always work - my mum was pregnant again, within a couple of months me arriving on earth inspite of me being breast fed - so not a reliable contraceptive but as far as endo activity goes it can delay the return for a while longer than the actual pregnancy.

Probably a lot better for the new baby too - so a double bonus if you can do that.

Not all women can breast feed - not all breasts produce milk, and some women get mastitis putting a stop to the milk machinery but if you can manage it - it should help the endo. Even if only one breast is working that should be enough to keep the right hormones coursing through the body.

It really depends on what stage your baby is at as to what course of action you take in terms of meds. some drugs are milk safe and either don't transfer in breast milk to the baby - some do transfer but are not known to cause the baby any problems and others are only for use after breast feeding has stopped.

It is something to discuss with your GP and research for yourself. All the hormone contraceptives and pain killers have feely available patient information leaflets online - so you can check up on what you have already got in the medicine cabinet and see which are breast milk safe and which are not. You might want to mark the bottles and packets with a magic marker so you know at a glance which ones you can use right away if you need to and which need to wait till further down the line and breast feeding is stopped.

and your body will have changed - what meds may not have worked before - may in fact now be fine, so to some extent a bit more trial and error my be needed to find the best solution for you, and failing all of that - try for baby No.2 and have another enforced break from endo the natural way !! (okay that's a bit drastic - but it is an option you may want to consider if you can afford to have two smalls on the go at the same time.)

I wouldn't worry too much just yet - do try and enjoy life with your new bundle as much as you can, time flies by and they grow so fast. Very best of luck for a safe delivery and healthy baby.

MrsClaireBear profile image
MrsClaireBear in reply to Impatient

Thanks so much lovely!x

I've had Endo for over 20 years. I have had three children and have breast fed them all. I also went on the progesterone only pill between each pregnacy, which for me, really helped keep my Endo in check.

It has been over the last ten years when I've had to stop taking the POP, that my Endo has gone ballistic! I have a frozen pelvis and adenomyosis too. I am now 43 and I will be having a hysterectomy, excision and bowel surgery next month.

Congratulations on your pregnancy and I hope you lovely baby brings you as much happiness as my three monsters have brought me.

Lots of love,

Barbara x

MrsClaireBear profile image
MrsClaireBear

Thanks a lot Barbara. I hope your next lot of surgery gets you healthy xxx

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