Newly diagnosed

[AlexR]

After just over a year going back and fourth to the doctors with pelvic pain and occasional swellings, i was sent for scans with not much coming back apart from normal cysts not enough to cause pain apparently. I was then asked do i want referred to a gyno? so i said yes i would like the pain sorted out/find out what is wrong to cause the pain. After waiting for the appointment to come through for the gyno i went to see him he checked me over said he couldnt feel/see anything but would like to do a laproscopy to check internally. So i had op on Monday 1st July when i came round i was told i had endo and it was on my bladder as well as my pelvic cavity and that they removed what they could and sent me home. My surgeon/gyno told me if i want kids i need to start now not to delay. I told my partner of 3 years this expecting support and a grown up conversation about our options and he seem to be angry at me saying he will not be rushed into having kids can i not wait a year or 2 when he's ready... I dont know if anyone else has had this reaction at all from partners or can help give me advice on how they manage or if they have successfully had kids after being told same thing?

[L1983T]

Hi Alex, may I ask how old you are? I am 30 and had my lap also this Monday it was on my left hand side and has been removed. How are you feeling? I am sore and struggling to sit up I'm not sure if its normal to be so sore. I am sad to see your partner is not being supportive that must be heartbreaking. I hope he is helping you recover and looking after you, I am single and live alone. I have not asked about children yet but I am so scared to think I may never have now, it's all I have ever wanted in my life.

[AlexR in reply to L1983T]

Hi im 28, ive got 3 cuts from my lap left side, belly button and lower down. Ive been in bed since monday cant sit up without it hurting and not been getting much sleep either. Im exhausted feeling not even that hungry having to make myself eat. It is heartbreaking and ive not spoken to him since this morning, hes went away with a mate. So i think i know whats in store next. I hadnt asked about the kids i think it was because the surgeon new i have a partner and because its a now or never it seems with me which made my heart drop hearing him say it. Ive wanted nothing more than a family of my own as well.

[Jillanovitch]

Awww ladies heart goes out to you both, I was lucky and had one son, I was 25 when he was born, I thank my lucky stars every day, I went undiagnosed till I was 39, not sure if knowing makes it harder, I fostered many children along with my son. I try and look for positives, I hope you'll both be blessed with children. Get well soon both of you xx

[AlexR in reply to Jillanovitch]

Thank you, i hope i am able to have children really do. Trying to look for positives just wish my partner would be more understanding and actually supportive xx

[cupcakegirl]

Hi ladies

I started with Endo symptoms at 13 and was diagnosed at 22. I can't tell you how many gynaes have told me I need to try for children, and that pregnancy will cure my Endo, but I'm far too ill to be able to raise a child properly (I also have ME or maybe lupus or a form of arthritis) and I refuse to have a baby as a medical treatment.

I turned 31 a few days ago and I'm really feeling the pressure to make a decision about children. My husband is 34. We both want children in theory but my husband works about 14 hours a day because I can't, I'm exhausted and in pain, I'm on 600mg of morphine a day which id have to stop, and I have no libido after a two year course of zoladex which ended 4 years ago and its never come back so we have no sex life. It seems impossible for me to even try.

The doctor should have said that in an ideal world you should try now, but only if you're in the right place to have a baby. Obviously your partner isn't ready - are you, and do you see him as your future husband/father of your children?

You've just had a lap to remove your Endo - personally, after nearly a decade of seeing gynaes and specialists, I would start some form of hormonal treatment to minimise and slow the endo's return - even just the pill taken three packs back to back. This should extend the effects of the lap as your periods should be less frequent and lighter so there's less bleeding internally. If there was a lot of Endo they couldn't remove, you might want a six month course of zoladex to starve and shrink the remaining Endo deposits - once that stops, it can take a few months to get your periods back and you need to let your hormone levels adjust so it's a good idea to take nothing after the treatment until you get your periods back, then start something like the pill. However, Endo is fed by oestrogen so some people decide to take a progesterone only treatment (mini pill, pill injection, implanon or mirena coil - although I'd strongly advise against the latter, lots of Endo sufferers seem to be having a very hard time with it but not being taken seriously and the side effects not reported).

This should allow you a decent amount of time - when your symptoms start to return, hopefully it will be at least a couple of years, you can then have another (preferably with a specialist) and clear out the Endo and possibly have your tubes checked if necessary, then you'll have 6-12 months where you're more likely to conceive.

Remember that only 30-40% of Endo sufferers have fertility problems - that doesn't mean they're infertile but that they have problems conceiving naturally. Unfortunately there's no way to know until you've tried - people with the most severe Endo have conceived naturally and some with the mildest Endo have been unable to conceive. Don't feel ruled by it - if you've only have symptoms for a year, the likelihood is that it's been caught very quickly (average dx takes 9 years) and before doing too much damage to your organs but that's not always the case. They also believe that Endo sufferers can release some chemical that makes it harder for the egg to implant - haven't read about that for a few years so I'm unsure what the current thinking on that is.

I hope I haven't freaked you out with too much information - the point I'm trying to make is that it's not for your doctors to tell you when to try for a baby, which they're very fond of doing. If you hadn't found this out, when would you have wanted kids - if at all? If you take anything that reduces the number of hour periods and ideally stops you ovulating, your Endo shouldn't get worse during that time - but you have to be aware that this disease isn't fully understood and there are always people whose bodies don't behave that way. Personally I'd also look at the Endo diet which lots of ladies have success with, and taking a supplement to improve your immune system in order to improve your chances.

I hope this helps - my husban was not great about the illness stuff in the beginning but we communicate a lot and thing are better. You need to have a lot of discussions with your partner about both of your expectations for the future and don't allow either of you to feel pressured into something that's not right. I'm sure this is all a shock to him too and it's very difficult for our partners in ways that are hard to for us to understand or take into consideration.

[AlexR in reply to cupcakegirl]

ive had problems since i was 16 but i also had an accident with horses when i was 14 which damaged my pelvis and lower back. So doctors have always said its just my back its inflammation. I also have mild spondylosis in my spine. I finally got my doctor to refer me and on the run up towards my op i kept getting told i doubt i have anything wrong its probably just ibs. The gyno/surgeon said if i want kids to start trying now this was not said as a treatment for the endo he said i had a lot of endo and was up on my bladder and other places removed as much as he could, he did check my tubes and ovaries and said they looked healthy so that was a good thing to hear. My partner has took himself off for 2 weeks now with a mate leaving me here having to cope with it. I want a family and before this i had spoken about a family with my partner and he was full of the yes he wants a family etc but soon as i have found to have endo he says in year or 2 then yeah but not now.

Im still exhausted from the lap on monday and waiting for future appointments with my gyno/surgeon to see where i go from here.

My periods are normally very light in first place and only last a couple days i get a lot more pain just before and after my periods not during. I have had a lot of swelling comes up over night and i looked couple mnths pregnant sometimes but then couple days and it would be back down. The pain i have puts me on me knees sometimes never had pain like it. Im glad the doctor finally referred me and the gyno did the surgery and found out what is wrong.

I know everyone is effected differently by it.

Its good to hear/read other peoples stories on what they have gone through or going through. I feel pretty much lost just now with not having my partner supporting me. xx

[cupcakegirl in reply to AlexR]

It's great news that your ovaries and tubes look fine. I'm not saying your gynae only advised you to have kids as treatment, but they have no way of knowing if your fertility is affected until you try and, although it might be theoretically good to try for children now, it may not be the right time for you - your boyfriend's reaction would certainly suggest that.

Over the years I've learnt how hard it is for partners, but having that kind of discussion and then going away for a fortnight is really not on. I think you hold take the time to think about what you want and have a big conversation when he gets back. Make sure you don't overdo it - it can take weeks or months for your insides to heal even if you look fine on the outside.

Take care and rest

x

[cupcakegirl in reply to AlexR]

Forgot to add, even if your periods aren't that bad, every time you bleed the Endo will bleed too, which causes adhesions and new Endo deposits to grow. The pain before periods is likely caused by a change in hormone levels which causes the Endo to flare up - its hard to say for sure as no-one really understands it fully, but regulating your hormones and reducing the number of periods you have should help. X

[AlexR in reply to cupcakegirl]

thank you, i really appreciate information/help. Yeah told him we need to have a proper conversation about it when he comes back, im so disappointed with his actions and as you can imagine upset as well. I new it was going to be a hard conversation to have but seeing how we had talked about a family long before the op the last reaction i expected was this. He seems angry at me well thats the way he's coming cross.

Will discuss everything i can with my gyno and take things from their, its all i can do really. I hope i heal quickly ive got a horse and thankfully got a star of a friend and shes dealing with her for me just now but dont want to keep getting her to do her for me feel bad x

[cupcakegirl in reply to AlexR]

Just be very careful with physical activity - you're more likely to form adhesions if you exert yourself and move around too much.

With your boyfriend, I think some men really struggle to communicate their emotions - obviously this is a shock to him and he doesn't know how to handle it, or where to direct his anger so unfortunately he's directed it at you. Even if he'd thought in an abstract way about having kids, perhaps the pressure got to him - I'm not excusing his behaviour at all, by the way. I think you'll have to wait and see what happens when he gets back - maybe he'll have calmed down and will apologise and discuss options maturely. If he's still acting this way, then I think you need to have a serious think about where to go from here - its tough to deal with this stuff as it is, you don't need the extra trouble! x

[AlexR in reply to cupcakegirl]

Yeah im trying to keep activity to a min, and my friend does say theirs no rush shes happy to keep helping but you know how it is i just feel bad having to get people to help. Hopefully he'll have calmed down and be able to talk properly about options and if not then thats another conversation. As you say i dont need extra trouble x

[busylizzy1985]

Hi alex hope you are happier and feeling a bit better today i had my lap 10 days ago now and the first few days are the worst but then i found i could do more every day but without exerting myself. I was told i have severe endo that they couldn't remove completely so unfortunately i am on zoladex which makes you menopausal for 6 months to try and shrink it and then i will have more surgery.

My consultant said then i should try to conceive but may need IVF. i had spoken about having a family with my partner and it was something we were thinking of in a year or two but we have agreed that this changes things and he is willing to try sooner so we have a better chance.

He has been really supportive but i feel guilty like i am putting pressure on him to start a family earlier than intended as i know he has a few debts etc he wanted to pay off first from his past. I still think it hasn't sunk in with him yet and in 6 months when the time to try is upon us he will freak out and change his mind.

[AlexR in reply to busylizzy1985]

Still feeling a bit numb about it all if that makes sense, been getting a lot of support from friends made me feel a lot better emotional dont feel as alone, I had to go to the doctors today as my temp keeps firing up to the point im sweating then goes back to normal but doctor took my temp said im borderline with it and to keep an eye on it. Im still really sore can only manage being up for about an hour then im shattered and feel a bit sickly/sore. Sorry to hear you're having to go on that, my sister was on that last year apparently and shes now pregnant i think 3 months along now (not sure as we dont talk) I hope it works for you and that youre partner doesnt freak out like mine, he's still away not even been able to talk to him and tell him how scared im feeling about it all. I think they dont understand exactly how it effects us. If your partner is being supportive thats great to hear and all you can do is make sure he understands everything fully. I know what yo mean by feeling guilty, i feel like if my partner says yes once he's cooled down ill be making him do something hes not ready for and i dont want that. I hope your man doesnt freak out in 6 months time and is still as supportive x

[AlexR in reply to AlexR]

when i was at the doctors today she said "i see it was a lot they had to remove" first i new as my surgeon/gyno hasnt seen me yet for follow up appt and spoke to me when i had first came round from surgery so was still pretty groggy