Endometriosis and trying to conceive. - Endometriosis UK

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Endometriosis and trying to conceive.

Kerrykeg profile image

Hi everyone, I was diagnosed with endometriosis August last year and was told to continuously take my pill so I would never have a period. But now me and my partner have decided we'd like to start a family and I have been off my pill for a month, but I have been in absolute agony practically every day. While continously taking the pill I still suffered with pains and swelling but now I have nothing to help control them and they practically immobilise me most days. They are very deep pains and this might sound weird but they feel more towards my bowel lately too, and I'm wondering whether this could be my endo spreading? Is it also too little time from stopping my pill for my endo to be making such a huge impact on my everyday life? I imagine there's not much that can be done for me if I'm trying for a baby, but I'm wondering if there are any herbal remedies I could try. Thanks in advance!

15 Replies

Hi Kerry, did you have surgery in August last year to remove the endo or was it just diagnostic? X

Kerrykeg profile image
Kerrykeg in reply to Jakey26

Hi Jakey26 I had a lap in August they found it then and removed what they found x

Hi Kerry, sorry to hear about your pain. I have been there and the pain is so deep and awful, it's hard to even describe. I have to post my whole story one day, I wast told the same thing, I should have a baby straight after laparoscopy, I said no to any hormonal treatment and did my research about alternative healing. What definitely helped me was taking evening primrose oil, taking vitamin B, castor oil packs on my tummy, not eating sugar, any red meat and diary, not drinking any tap water and much more. It's been three months since I follow this diet and take supplements and I don't have any pains. I have the diet written down on my fridge i can always send you a copy if you would like. Also drinking raspberry leaf tea helps! Good luck x.

Kerrykeg profile image
Kerrykeg in reply to Irena29

Hi Irena29 I didn't know that diet could make such a huge difference, I currently don't eat red meat and I've just started taking folic acid as it's good for babies if I do conceive but also aids tiredness which I've been feeling since stopping contraception. I'm definitely intrigued about the diet you're on it sounds like a lifesaver! X

Irena29 profile image
Irena29 in reply to Kerrykeg

Yup making changes in your diet will decrease the symptoms and prevent the spread of endo. So the endo diet should be anti-inflammatory and building up the immune system, taking folid acid is great, especially if you are trying for a baby. Are you taking the before conception tablets? As they have vitamins B and folid acid too. But please include in your diet: evening primrose oil, flaxseed and maca root( i have both in my porridge in the mornings) as they help balance the hormones, vitamins B and D, echinacea drops- good for immunity, Epsom salt in your bath does wonders, and then exercises, hot water bottle, acupuncture- although not sure if that is save while trying to conceive, and as I said in the previous post raspberry leaf tea it's great for hormone balance but you shouldn't drink it while pregnant. In terms of food I have completely changed my diet, it is very hard but worth it. As I said no red meat, no dairy especially cows milk, no sugar, alcohol or coffein, no tap water, fried food, no wheat and gluten ( although I'm now just eating any bread and pasta as don't really believe the gluten free business):) food to eat would be- organic chicken( normal chicken is full of hormones that are bad for endo sufferers) mackerel, salmon- great for omega 3, all the nuts and seeds you can think of, loads of veg and fruit,ginger tea, turmeric, cinnamon, avocados, almond milk, loads of water, chamomile tea, coconut oil, olive oil, beans and lentils, whole grain pasta. I think that what helped me most was cutting down on sugar as I used to have a very sweet tooth, and also not drinking cows milk and tap water, but as you can see I have tried loads of different food and supplements so can't point out exactly what helped, but I do feel much better. Hope that helps x

Kerrykeg profile image
Kerrykeg in reply to Irena29

Thankyou so much! I'll definitely try these, have to make myself a new shopping list! X

Irena29 profile image
Irena29 in reply to Kerrykeg

Ok😊you are welcome,  good luck 😊

I can confirm this diet is helpful. I was advised the same due also to my PCOS, but dropping dairy helped me with the bloating and pain during my period. I was eating gluten free by a month, but when I got pregnant I cannot eat them like before ;). I used maca root as well and Pregnacare before conception :).

I have endo and I've got 2 children (think I was really lucky!) what I did was: take before conception supplements, vit D, folic acid (I see you are already doing that) and evening primrose oil. Totally avoid dairy products (especially cheese full of hormones and outer bodies can't digest that, no cows milk- same as cheese, full of hormones, the only dairy I take is organic eggs once or twice a week. I still eat bread, only whole meal but I only eat 2 slices at breakfast, I tend to make soups and freeze them and have them for lunch. Like others said: lots of fish and chicken. Lots of fruit &veg, you want to be as healthy as possible for your baby 😊 my friend recommended me alone Vera juice (Holland and Barrett are doing an offer on it just now) so I'm going to try this out. Good luck! P.S. I had my endo removed AFTER I had my second child, I had symptoms from 2008-2009 onwards and my children were born 2011&2012. Really hope this will happen for you! ☺️

Kerrykeg profile image
Kerrykeg in reply to Monikka29

Thankyou so much I have my fingers crossed I get lucky too and congratulations on your two children! X

Monikka29 profile image
Monikka29 in reply to Kerrykeg

Thank you 😀 it took us nearly a year to conceive our first child (now I know it was because of endo) and with the second it just happened, so don't be disheartened if it doesn't happen right away! My gynaecologist said that after you have your endo removed then it is easier to get pregnant and especially if you had your surgery, hopefully it will happen to you and very soon 😀 having children is very hard work, but worth it! Good luck! X

sana_17 profile image
sana_17 in reply to Monikka29

Do u all get watery discharge after periods all the time is it due to endo or something else

Hi!

Really empathise with this - coming off the pill for me was horrendous!! I had had 4 surgeries and been on pill back to back/prostap so all Endo was removed - like you. It would be unlikely that deep infiltration of the bowel would have occurred in such a short period of time if they got everything, but it can happen in very aggressive cases. 

What is more likely is that your Endo has 'gone bananas' and is having a field day with the freely available oestrogen now you're cycling normally. But as my consultant said to me 'you'll not explode' ... Don't know how comforting that was!! The first few months off are the worst particularly if you, like me are having to come off hardcore painkillers and restrict yourself to limited and infrequent paracetamol unless desperate. 

Acupuncture was amazing for me as was the Endo diet (see Endo resolved website). I would highly recommend bbt tracking (see Babycentre uk for a free chart). I tracked Endo symptoms alongside temp and cervical mucus which helped my doc to diagnose upper gi Endo, most importantly I realised my cycle ranged from 22-29 days and I ovulated anything from day 12 to 21 so the textbook ttc and ovulation tests were never going to work for me. With bbt we fell preg quickly which sorted out the extreme pain. 

Peppermint tea is very good for bowel Endo and obvs avoiding alcohol/caffeine (both of us did that and took pregnacare pre-conception - hubby very supportive as he knew I was in a lot of pain off pill) 

Sending you a big hug and lots of luck. I know it's so sore not being able to have treatment, it is worth it in the end so hang on in there and vent on here anytime you need to. Xx

Ps. Would stick to the preconception multivits whilst ttc - echinacea isn't safe.

Here is the war and peace on the to dos and not to dos

patient.info/health/plannin...

You can go to an acupuncturist who specialises in fertility and that is def safe in pregnancy. Remember no hot baths, saunas, jacuzzis in pregnancy, massages or hair dying in early preg (caution after - only preg massage/highlights of you want) and no gel nails! 

The what to expect book and app are brilliant. 

endo-resolved.com/diet.html

babycentre.co.uk/a7069/down...

Kerrykeg profile image
Kerrykeg in reply to applebird

Thankyou so much everyone seems to swear by the preconception vits so I'll definitely take a look at them, same with the endo diet! X

applebird profile image
applebird in reply to Kerrykeg

Yeah they are brill, boots do 3 for 2 so about £40 for 3 months per person. Hubby's asthma improved and I had less pain/more energy so def work generally as well as with getting preg x

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