What is going on with my body ..... pleas... - Endometriosis UK

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What is going on with my body ..... please HELP!

shelly144 profile image
15 Replies

Had my second lap in January, my first period was v.sore but it was expected. I'm returning too work today and for the past two weeks I'm having period like pains but sharper but still no period. This is something which normally doesn't happen to me, normally I have one week of period cramps and then My period comes. I'm really starting to worry as I don't understand the change to my menstrual cycle, has anyone else experienced this or know what could be wrong?

I have had a really bad night, v.little sleep with cramps in Lower abdomen, stabbing back pain a slight burning sensation in bladder :( with me returning to work I'm really scared as how I am going to manage.

I really feel today, that is this what life is all about suffering and always in distress and feeling depressed? To be honest I just want to be a normal person.

Sorry for the rant, but I'm just scard of the pain an symptoms I'm going throu, period cramps have got wore since the lap.

All knowledge, experience or thoughts are welcome as I am really worried and just want to know what could be going on instead my body.

Xxx

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shelly144
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15 Replies
Christel profile image
Christel

Hi there.

I stick to the Endo diet & it really really helps me & many others I know. Basically it is no dairy/red meat/soya/wheat/caffeine/refined sugar/alcohol .

I know a lot of people just cut out wheat & feel some improvement.

I'm vegan anyway so for me it was cutting caffeine /sugar/wheat/soya . I've now introduced soya back because I had the mirena but the rest I stick to pretty much .

Hope that helps.

in reply to Christel

Hi Christel, I am interested that you are Vegan. I thought this helped me last year and my Naturopath said I wasn't getting enough protein and Gyni said no it was the pill that was helping. Since eating meat and Dairy again my pain levels sky rocketed I don't think this is a coincidence do you?

Awww Shelly 144 I am so sorry you are suffering! There will be a way to help you I am sure, just take the time you need to heal. Find the things you truly love and spend time doing that if physically possible. I have to take antidepressants, but my rescue animals and knitting socks helps me to find some peace with life. Big hugs to you. Xx

Christel profile image
Christel in reply to

Lovely I was on anti depressants for 20 years. I stopped them just over a year ago & never looked back. I have 2 rescue hounds. Animals are a big comfort arnt they? Xx

in reply to Christel

I know, I said to my Mum the other day, they stop me saying I can't. She was worrying I have taken on too much in my condition as I have a lot of Bunnies and Cats, plus one dog, but it is true they really do help. I just have to stay organised.

Christel profile image
Christel in reply to

Yes they force you to get up each day as they

Need attention. I have 2greyhounds. Both had horrible race lives.

I felt much better mentally as a vegan so I wanted to try with no meds . It was very hard at first.

Christel profile image
Christel

Anyone telling you vegan is not healthy is not reading up & if a naturopath said you were not getting enough protein I would not see her again. Every food we eat has protein in it. It is really really hard to be lacking in protein.

I did struggle at first with iron/b12 but that was when I first went vegan from veggie 3 years ago.

I now use a product called Nutritional Yeast (try Amazon or Waitrose/Ocado) with B12 . It is a type of yeast that does not give you candida . It is used a lot by vegans & often referred to as Nooch. It is a sort of cheese flavour & used in sauces a lot. I have it on my rice cakes with sunflower spread.

My gp is really old school & she fully supports vegan diet. She believes vegans are generally in better health than veggies because dairy is not good for the system & because we are more aware of what we eat.

I know it really helped my pain levels .

It might not be an easy change but if you have already tried it then you have some idea.

Any advice you need just say. Xx

in reply to Christel

Aaaah, thanks so much Christel. I'm definitely back on the Vegan thing now, it sits better with the conscience too, but let's not get on to that. It was obvious to me last month what the difference was. I am so cross with the Naturopath. I am living abroad at the moment with hubbies work and Vegan is extreme where we are. They love their cheese and Meat here. Most stuff I have to mail order and wait for shopping trips back to UK. :0(

Christel profile image
Christel in reply to

Which country are you in? Can I help at all ? X

Aww you're very kind Christel! We're in Switzerland. I have a trip coming up to UK though. First stop is always Waitrose! ;0). Thanks for the offer though. If my French was better I am sure I could find out that there is somewhere that sells things like nutritional yeast etc, but for now online is easier. Thanks again. Xx. It's a bit lonely to be honest as I am not very into expat coffee mornings, I prefer my animals. But I am so glad I found this site, it is good to have some support. :0)

Impatient profile image
Impatient

Shelly - it's still early days of healing after a lap.

It can take months to get back to normal. and up to 2 years for periods to settle back in to routine - after any operation - doesn't even have to be a gynae one.

I don't think what you are feeling are period cramps. much more likely this is post op pain from where you your dhesions have been cut, endo lesions removed and so on.

the tissue swells up because it is a wound and this puts strain on everything else nearby.

It does calm down ..eventually.

After my op in 2011 it took me 4months to be op pain free and I was having zoladex too.

So I knew that the pains were not coming from the remaining endo which was dormant at that stage.

Keeping on top of pain killers so they don't get a chance to run out of steam before you top up, and vary the type you use also so you don't overdose or becoe dependent on them.

Even if your op was right at the beginning of Jan - that is still only 6 weeks.

Each of us varies in how long it takes to be op pain free, because it depends on our healing powers and also on what work was done inside us and how our bodies reacted to that.

The periods will return - but it is very common for them to be out of whack for a while. missing a period is common, so too is having a etra long and heavy bleed for the 1st period after an op when it does come, because your body is still very much occupied with trying to heal the internal wounds elsewhere and cannot spare much energy for clotting and stopping the bleeding from the uterus.

It is always worrying when you come out of an op and expect all to be well again in a reasonble period of time, but it varies so much. Speak to your GP if you feel you are not yet well enough to return to work and get signed off for a week or two and see how you get on. It might be all that you need, or you may need even longer.

Another option is to speak to your employer about returning to work gradually, shorter hours in the day or a couple of days a week for a while till you are over the worst of it.

shelly144 profile image
shelly144 in reply to Impatient

Thank you so much for your kind thoughts and advice. My employer is really good and supportive as they understand that it was a big operation.

Due to a low bmi, taking pain killers is something which I find hard to take, so I take them when pain is unbearable but always use heat patches. The pain in my lower right side and back is sore especially walking and going up and down stairs. I may be patient and take care until I heal.

Thanks again for your kind thoughts, I got to see my consultant in March to hear all about the operation, so fingers crossed I don't get any bad news.

Many Thanks, and take care x

Scooteeder profile image
Scooteeder

Hi Shelly,

It sounds like you're having a pretty rotten time at the moment. Like you, I have Endo, and I know that it is anything but pleasant. There are times when the illness can really get you down. Especially during your periods, or when you are waiting for, or recovering from surgery. Endo takes a lot out of you, because you have to live every day of your life with an unwanted, and unpleasant illness that causes all sorts of horrible symptoms. Worse still, it can make you feel fatigued, and generally "run down".

Take heart... getting through a lap is not going to be easy, so you mustn't be so hard on yourself. I've been through 3 laps so far, and am due a fourth in about 3 weeks' time. They clearly aren't fun for anyone, so I can empathize with how you feel... I am generally pretty AWFUL after having any surgery (I have a particularly BAD reaction to anaesthetic!).

I note you say your lap was in January, and that the first period you had after it was very sore. You also say that you are now experiencing period-like pains, which you've had for about the past fortnight. You appear to be worried that they are very sharp pains, and that they have lasted for longer than is usual for your menstrual cycle, because you have not yet started another period.

I can understand that this must be very unpleasant, and disturbing for you, as you say that you are returning to work. I can well imagine that the thought of having to cope with starting work again, AND having to deal with pain is pretty stressful, to say the least.

I'm hoping that maybe I can give you some help or assistance. Remember, this is only my advice, so it isn't necessarily right - you do not have to act on any of it, if you do not feel it is appropriate to you...

First of all, I'd like to say to you please don't worry yourself too much about the period-like pains, or the apparent change to your menstrual cycle. I am sitting here, writing this, with a leaflet that I got from the Hospital that I will be attending to have my next lap. The leaflet tells you all about Laparoscopic Surgery, what it is, the risks, and the recovery. Now, here's the bit that I hope will help you...

The leaflet says that following a lap, it is common to have some vaginal bleeding for up to 7 days after the surgery. Also, your periods can be affected by the surgery, and may initially be heavier and more painful. However this should settle after 1-3 months. The leaflet says that you should not use tampons, only sanitary towels for your first couple of periods after the lap, because tampons can introduce infection. It also says that if you are worried about very heavy or prolonged bleeding, you should visit your G.P.

So, it may be that YOUR periods have been temporarily affected by your lap, and will gradually settle down again. The pain you are experiencing could be as a result of the fact that your body is still healing following the surgery. Remember, any surgery is an invasive procedure - it cuts, and therefore causes inflammation and wounds that take time to heal.

The advice leaflet that I have says that you will feel tired and sore for a time after your operation. It advises that you avoid doing anything strenuous like housework, or heavy lifting for about 10-14 days. You can normally return to work around this time.

I don't know if any of this is helpful, or not, but I hope that it gives you a little more information. Personally, I feel that if you are concerned about the pain that you are experiencing, and are worried that this may be unmanageable at work, it might be a good idea to have a chat with your G.P. (just to rule out any infection, that could be the cause of pain). Besides, your G.P. may be able to give you a note to sign you off work for a little longer, if this is what you would wish for, to enable you to recover a little better before starting work again. Otherwise, your G.P. may be able to provide you with painkillers that more effectively keep the pain at bay, and have few side effects, so you can use them at work.

The other alternative is that you return to work, and see how you manage. If this is what you want to do, it might help to talk to somebody supportive at work (if your boss is supportive and easy to talk to, good - otherwise, try to find somebody supportive in H.R. to talk to). You could explain to them that you are happy to return to work, but remain in some pain after your surgery, so you would like perhaps to discuss lighter duties, or to request that you do your work, but be allowed to rest occasionally if in pain. Explain that you may need to take painkillers, and make sure that your employers are OK with this. You need to have their help and support at present, to enable you to return safely to work. If they are at all awkward, I would advise getting the back-up of your G.P. or a Union (if a member). However, as you are trying to sensibly negotiate a safe return to work, I would expect that any decent employer will want to work with you, and hear what you have to say.

Sorry this has been such a long post. I just wanted to try to give you as much useful information as possible. Whatever decision you make about things, please do make sure that it is the one that suits you best. Just being able to stay in control, rather than having your Endo control you, can give you a huge sense of relief!

Wishing you all the best with everything,

Elaine Ellis.

P.s. if you ever want any more info, or to share experiences, just e-mail elaine-ellis1@hotmail.co.uk

Take care + good luck.

in reply to Scooteeder

Awwww Elaine such a nice reassuring post. It helped me too. Thank you.

shelly144 profile image
shelly144 in reply to Scooteeder

Thank you so much for your kind thoughts and advice. My employer is really good and supportive as they understand that it was a big operation.

Due to a low bmi, taking pain killers is something which I find hard to take, so I take them when pain is unbearable but always use heat patches. The pain in my lower right side and back is sore especially walking and going up and down stairs. I may be patient and take care until I heal.

Thanks again for your kind thoughts, I got to see my consultant in March to hear all about the operation, so fingers crossed I don't get any bad news.

Many Thanks, and take care x

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