Struggling with Endo & in need of some ad... - Endometriosis UK

Endometriosis UK
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Struggling with Endo & in need of some advice.

Hi Ladies,

I have been diagnosed only a few months with Endo. I basically wanted to talk to you all going through the same problem. Although I have a great support system, I feel like no one really understands it. I’m hoping you lovely people can give me some support/words of advice.

I currently have cysts on both sides, the one on the left roughly 6cm and the right is around 4. On one hand I'm very glad to find out my diagnosis, as my periods just got worse every time and I have been suffering with the pain for almost a year and a half. However, it is a difficult thing to adjust & I'm worried now that it might ruin my chances of conceiving, I’m not ready yet, but I also don’t want that choice taken away from me. I also just recovered from a 3-year injury on my lower spine and coming out of that was a huge journey. I was ready to return to working full time as well but I feel as though I'm back to square one!

Currently, I'm having so much discomfort on my left side and my bloating is so severe, even though I eat healthy, the bloating makes the left side pain worse. The only thing that's my lifesaver is 'Milk of magnesia'. My body has changed so much and it's kind of upsetting to see that no matter what I eat my stomach looks so huge and feels uncomfortable all the time, not to mention I constantly feel gassy. Intercourse is quite painful, and although my husband is very understanding, it’s hard to cope with that.

I'm due my lap (date not confirmed) and I'm terrified of this, I've never had surgery and I've got so many things running through my mind. I guess my questions to you all would be how can I be better prepared for this surgery and what will I expect right after having it, any advice?

Have any of you ladies who’ve had the surgery, been able to get pregnant?

Are any of you finding you get tired easily? My nurse though I may have chronic fatigue, but this all started when my problem started. How do you manage to stay alert/awake?

Also, what ways are you ladies finding to cope with everything? I find sometimes I get quite down and angry about things, especially waiting to hear about my laparoscopy date, it makes me so anxious and it feels like I’m in limbo at the moment.

Sorry for all the ranting, but I needed to get that off my chest ☺

Thank you x

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Hi - endo is an autoimmune disease and affects so much more than your pelvic. Chronic fatigue syndrome is a symptom and is likely to be due to adverse reactions involving our hormones. IBS is also a symptoms as it is affected by hormone changes. Click on my name and read my first post on the many symptoms you can have.

If you are being seen by a general gynaecologist this first lap will be diagnostic and they would usually deal with any mild endo they find. This is likely to involve draining the cysts but unfortunately they will have a good chance of recurrence as the only way to avoid this is to completely excise them which is more the work of an expert in endo. A lot of women find that they have continued symptoms after a first lap as deeper endo is often missed. See this as the first step on the road to better things and you can take charge of your treatment from now on. After the lap obtain a copy of the operative report so as to be clear as to what was found and done. If after you have recovered from the lap, which might take quite weeks depending on what is done, you should note any continuing symptoms then be aware that there are endo specialist centres should you need further investigations. Thorough treatment of your endo will give you the best chance in terms of fertility later and in preventing recurrence.

Your IBS and immune symptoms could benefit from a holistic approach after surgery and I am in the middle of a post on this which might take a couple of weeks to put up. If you follow me you will be sure to see it. x

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Thank you so much for taking the time to write back :) this is all very useful information for me. The gyno I'm seeing specialises in Endo, was lucky to find her because my insurance paid fro private consultations, she was the highly recommended one. Although, now i'm seeing her via NHS and for my Lap. I will definately make sure I ask for the necessary reports.

I will follow your page and look out for your post.

Once again thank you :)

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Hi Red, congrats on getting through the spinal injury, that sounds awful and I'm not surprised you don't want any more hassle after that!

Please don't be frightened about the lap, the first will be diagnostic and they're unlikely to have time to do any heavy duty work. I moved house 3wks after my first and was up and about every day. I struggled a bit but I think this was due to the ongoing disease rather than the lap. You honestly should be totally grand after 4-6 wks or less and will feel a massive relief at knowing what is going on! I've had 4 so far sometimes going in on the morning, sometimes the night before for bowel prep. You will feel like total #### when you wake up - but thankfully iv drugs are wonderful stuff! Within the first 24 hrs or so they will have you up on your feet, showered and moving about. You might get some discomfort as they pump your tummy full of gas to be able to see with the laparoscope and this needs to dissipate post op. The only other thing I've found is that my bladder is a bit lazy after op as doesn't react well to being moved about!! You will find the gynae ward full of supportive faces, the nurses are kind and having a group of ladies around going through similar types of situations really helps get you through. It's a few days discomfort to answer so many questions and you will cope better than you think. Have your house all tidy and organised and the comfort clothes/food/dvd's in stock for when you get home.

Here's some links that may help you understand what it will be like

endometriosis-uk.org/your-l...

endo-resolved.com/laparosco...

It's wonderful you've been able to get an endo specialist from the start - it makes all the difference. My advice re. conceiving would be have the lap see what the result is and once they've treated you, if you're settled - go for it! There will never be a right time and nobody is ever 'ready' really. From personal experience we had a chance to try after surgery no. 2 and didn't go for it which I massively regret. We are now 'ready' but a few surgeries on we have less of a shot at success and I'm more poorly so sex is harder.

I know right now everything must be disorientating, to feel angry is perfectly natural when you're tired and sore all the time! I hate when things are in limbo too so completely empathise.

Currently I'm hoping to start swimming and acupuncture to help, and am relying a lot on my husband and family for support.

It really is about managing the disease so it has the least impact on your life and in time you'll get to know what works for you.

Wishing you all the best for your lap, don't be scared you are stronger than you know x

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Thank you Applebird, it’s been a lengthy recovery. I have found your advice very helpful to read through and very thankful to you for taking the time. It’s really good to read all the things that I will expect from the surgery and after, thank you ☺

I do hope I’m lucky enough to have supportive staff, as that will be vital. I was told on my last visit to the Endo specialist, that I will have 3 incisions, one near the belly then the other two where they ill be draining the cysts, is this how it usually is? When you say your bladder is lazy, so it's hard to pee? and after how long was it ‘normal’? Also sorry to ask but did you have any issues with constipation after the surgery?

Oh thanks for the heads up on keeping the house prepped, I think I can be pampered a bit hehe! Luckily my mother will be flying over to help take care of me, as my husband cannot take too much time off.

Yes, you are right, I don’t think anyone can ever be ready, but I think if they can give me the all clear, then I will want to try. I’m very sorry to hear that you are having a few more surgeries and that conceiving right now isn’t easy. I hope that everything will work out for you, don’t lose hope. I’m sure your doctors will help you as much as possible and you will have the opportunity to try again.

Oh swimming is a good idea, I have just started yoga, but think I will also add swimming to my regime. I’m glad to hear you have a good support, it is very important!

thanks for the links, very handy indeed! I honestly feel so much better having these questions answered from personal experience.

You’re very right and I hope to learn how to manage the disease, it’ll take time but I’m sure I’ll get there.

Thank you for your wishes & I wish you the best as well, hopefully one day we will both be sharing good news on the forums ;)

x

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It's no problem and am glad to help. I remember when I was diagnosed it was such a scary time and you don't know what to expect with anything. I completely related to your symptoms and how difficult it can be to adjust to endo and all it entails.

As to incisions - yep they usually do between 3-4, usual places are belly button (so it's hidden), top of bikini and then to the left and right of there just where the hip bone is. My first two surgeries were with a general gynae surgeon so scars a bit more noticeable (to me) - good news with endo specialist they're hardly there now even though the surgery was more recent! (all aspects of surgery have been much better with a specialist). As for the scars they're tiny, you'll still be able to wear bikinis and nobody will bat an eyelid. Within a few days it all starts to heal up, most of my stitches have been dissolvable, if there are any that aren't you just go to the gp a few weeks later to have them removed (quick and easy).

I had endo on my bladder and ureters and in general organs don't like to be touched so this is why when you have surgery they always ask about when/if you've been to the loo. I must emphasise most people are fine and get going with both bowel and bladder within a day or two. For me my bladder wants a holiday after surgery, so it meant a few days of catheterisation - if you can't go they scan your tummy and if the bladder has more than 500ml they need to empty it - small catheter and kidney dish. It sounds awful but is pretty much like a quick gynae exam and after a few goes it's a bit like using tampons. Again doesn't happen to everyone, I just found it annoying because all I wanted was to snooze at the time!!

The bowel they won't interfere with it just takes its time, they will probably give you lactulose or something to get things moving. I've always been a bit constipated after but it's the painkillers esp. Codeine that do it. Don't worry about it - keeping your meds on a tight schedule to control post surgical pain is more important. Everything else will sort itself out.

It's fab your mum is going to be with you :-) you will probably just want to sleep for the first few days after, but within a week you'll be much more active, I was out of hosp a wk before Xmas once and you would never have known from the photos!

So glad the links and everything helped answer some queries for you. If there's anything else you're wondering about, even small stuff, just post away. Online forums are so good for getting info and you'll find with time there are a lot of women around you even in day to day who have endo and have gone through the same stuff.

All the very best of luck to you, it will all be done and you'll be at home getting pampered before you know it! :-) and yes I hope we have good news to share on forums too. Remember most people are posting/active online whenever they're facing a surgery or tackling an endo related prob. Except in very severe cases, there are days, weeks and months inbetween where symptoms are managed and the life goes on. You will definitely get a handle on all this, and trust me when the surgery is all done, no matter what, you'll feel a big relief x

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Thank you so much! Your advice has been so helpful & thanks for answering my other questions too, really good to know all this.

It helps a lot to know other have gone through this and coped well. I'm hoping that everything will be much better after the surgery and I can resume to a somewhat normal life!

Hope everything goes well for you! :)

x

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After your lap, you may feel some shoulder pain because if the gas they fill you up with. I found that heat bean wraps (like the ones you microwave ) were really helpful to lay on my shoulders and tiger balm! This might be alittle tmi, but, Also, make sure your bowel movements are super "easy/soft " I found with all my laps, that if I was even alittle constipated at all, I felt quite a bit of discomfort. Much love endosis!!! I too feel sooo isolated and alone at times, but I'm sograteful I have all my online endosisters for support. Were all here for eachother and are in this together!

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Nothing here is TMI, it's all very useful and helpful. At least having an idea of what to expect, gives me a bit of ease. I will be keeping to the 'milk of magnesia' to help with bowel movement, so far it's helped when I get constipated.

Than you so much for the advice, it really does help :) yes it is wonderful to have the support here from everyone.

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