Bitter sweet: in need of help: I suffered... - Endometriosis UK

Endometriosis UK

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Bitter sweet: in need of help

Roomarcus profile image
8 Replies

I suffered so badly with endometriosis I was due to have my second lap in 7 months. The week before I was due to meet with the consultant I found out I was pregnant. I couldn't believe it. I had a lot of swelling and hip pain during my pregnancy this was put down to being pregnant. I had my beautiful little boy and took him home.

For three weeks I was in agony with my swollen l legs and I felt I had just had him.

By the end of the third week I had lost mobility I was in agony and couldn't walk. First doctor said I had a trapped nerve in my hip and back.

My symptoms became a lot worse and not only was I unable to walk my temp was sky rocketing and I was extremely ill. To cut to the chase I was went to hospital they couldn't find the infection they thought I had so sent me for a cat scan. The results of the scan came back and they had found I had many blood clots. In my legs, hips and stomach.

The largest clot is sitting there in my largest vein. To make things worse they found a hole in my heart. They had never seen anything like this. For the first three days they weren't confident I would be alive. so I have been treated like a freak show and I have been seen by over twenty different doctors. Each time I meet a new doctor they tell me how lucky I am to be alive and then either I shouldn't have another child or I could at great risk and with medicine through out.

I have been unable to walk until this week (two months later). I can't carry him or do many of the exciting things new mums do. I am on a high dose of blood thinners so I am like one big bruise my new born bopping me feels like he is Mike Tyson. I'm on very strong painkillers which allow me to walk a short distance around the house. I'm s going to be a long recovery.

I am very lucky for somebody who has been so unlucky. I've fought really hard to get better and being able to walk is a big thing. My son is an angel and isn't hard work. But I've had no choice but to let everybody else take over and now I feel useless and very depressed. I know I should be thankful and I am! I just feel very depressed. I thought endometriosis would be the hardest thing I would face and I'm not even sure I have beaten that. I know I'm very blessed to of had my son and it's gift that isn't gifted to all who deserve children. But pregnancy has nearly killed me.

I know I'm lucky and in some respects I feel very selfish. I do Just feeling very down and teary.

Has anybody else had anything like this?

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Roomarcus profile image
Roomarcus
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8 Replies
endopains profile image
endopains

That's awful. I'm so sorry. You aren't ungrateful - yes you have got to have a baby but you haven't been able to be a mother. And you've been in agony. It's weird how endo makes everything a compromise. You might get to do things but not how you wanted or imagined. I really hope you get answers and relief. Congratulations on your boy :)

Lidzz profile image
Lidzz

Awwww!!! Ifeel for you.. Your not being selfish, you are only human and been through a lot. I think you should slow down and just be with your son, it's about quality time and life is too short, just live it. Find out if there are others in a the Same situation, you may need counselling speak to your g.p or your partner.. I hope this may help... Take care.

Roomarcus profile image
Roomarcus in reply to Lidzz

I just think you're right. I love and enjoy my son. But I keep getting flash backs of all the things that could of killed me and I just feel terrified. I've never been a scared person before. It seems silly because even though the treatments on going and I'm getting better I'm feeling down.doesnt make too much sense to me. X

applebird profile image
applebird

Hi, wow what an ordeal you have gone through. I haven't been through anything like this, but my mum had a difficult pregnancy with me so I can understand what you're going through to a certain extent. She is a type 1 diabetic and suffered from preeclampsia and numerous complications that landed her in hospital 13wks before I was born. At that point care wasn't as good and it was thought unlikely we'd survive. Complicated birth viewed by 45 people!

She wasn't that capable of being involved the first while, I think this bonded me pretty closely to my dad.

I know this is a rubbish time to be so poorly and your hormones crashing down isn't going to be helping you any. Be as involved as you can with your little boy, talk to him, if you can't lift him stroke his head and be as close as you can so you're still a part of it all. You will get better in time and be able to do all the fun stuff again, it's just a matter of waiting it out.

Have they done anything other than blood thinners to try and dissipate the clots or said how they occurred? Are they intending operating on the hole in your heart or is it too small to cause an issue unless you're under stress I.e. Pregnant. X

Mabes profile image
Mabes

I'm so sorry for the trauma you have been going through. I don't think you are being ungrateful or selfish. If any of us endo ladies are blessed with children, I think we wish to be able to enjoy the process, especially if that may be (or is) the only child we can have.

Emotionally you have to take time to go through the feelings that arise from this situation and don't put pressure on yourself to be a certain way for others... You feel how you feel and that is valid.

CP17 profile image
CP17

I agree with what everyone is saying... I think you have the right to have whatever feelings you're having, including feeling depressed, and you're not obligated to only feel "lucky" to be alive. The fact that you're alive doesn't take away from the fact that you've been through a very painful and scary experience. You don't sound selfish at all. Your feelings sound totally normal for someone in your situation.

Riyan profile image
Riyan

So sorry to hear your story, You are recovering from a life threatening condition. It is quite natural to be depressed at this time. But you love your boy. You can't able to do your motherly duties because of your illness. You just need more time.I am just thinking your condition after your childbirth resembles as DVT (Deep Vein Thrombosis) or DIC (Disseminated Intravascular Coagulation ). Did the doctors mention any diagnosis of your condition? Did doctors say that because of endometriosis you had clots in the multiple organs?

Roomarcus profile image
Roomarcus in reply to Riyan

It's Dvt I but it's very extensive from my legs to the top of my diaphragm. I had never suffered from clots nor had anyone in my family. The same goes for endometriosis. They have said that they believe my pregnancy provoked it. But after I can be taken off the blood thinners safely I have to have more tests to find out what caused it.

I asked if my endometriosis caused it but they thought not.

X

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