Endometriosis UK
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Hello

Hey, so this is my first post. I'm two days post laparoscopic surgery, in which they found endometriosis, and I have now, finally, been diagnosed officially. Doctor removed what she could and said the surgery was a success. I haven't spoken to the dr since, I have an appointment to go back in a few weeks for a proper chat when I won't be feeling so groggy and able to hold a conversation properly!

So I'm sore, to be expected, but my I didn't expect the pain in my shoulders/chest/back from the gas to be so painful! Any hints/tips to get that fine would be greatly received!

Plus now what... so I'm now officially diagnosed, after years of waiting and going back and forth to my GP. I was lucky enough to receive private funding to see a specialist this time and get the surgery done rather quickly, but that's it now. After my post op appointment I will have to go back to my GP and be seen/treated that way which I've had nothing but bad experiences with and was basically told I'm a woman get over it. So now I'm scared I'll be back to that.

Sorry for the long winded, random post! Still on medication and not really sure how to deal with being diagnosed now.

So onto the next stage!

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Hi,

I had a lap and due in 2015 where they diagnosed me with endo, unfortunately they said it was significant so couldn't treat during that surgery but I didn't want the more invasive surgery (similar to a c section scar putting you out for 6 weeks)

I have been doing acupuncture for the last year to help with my monthly cycles which I know might sound strange but it really does help! I'm so glad I took advice and gave it a try.

Also they advise diet is important, I haven't personally tried it but cutting out wheat and dairy is meant to be a good way of helping ease the pain.

Can you have contraception to assist? I couldn't really go down that route as me and my partner have been trying to conceive since before my diagnosis.

The trapped air really can be painful, I just kept moving to try and get rid of it/move it which helped.

I think once you've been diagnosed it's always so hard to handle but I promise you it will get easier. Wishing you the best of luck

Xx

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Thank you for the reply.

I have heard about acupuncture helping with endo, but always been a bit sceptical and it isn't cheap either.

I can't take anything hormone based as well I just don't react very well to it at all, and also we are trying to have a baby so obviously counter productive!

I've cut out dairy from my diet a while back now, but didn't know about wheat so will look into that.

I think I've possibly always had endo?? I had really painful periods as a teen when first starting my cycles, ended up being put on the pill at about 12/13 to stop the pain and stayed on the pill until I wanted to have my first child. Then went straight back on contraceptives since having him, but struggled with what to stay on as everything reacted so badly since then. Been off contraception for 2 years now and it's been awful. Repeatedly told I was having water infections monthly, for 8 months!! It's been a long and painful road, and although I felt happy I have finally been listened to and have been given a diagnosis, it is hitting home now that this is with me for the rest of my life and I assume can get worse?

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Im doin accupunture and internal pelvic floor physio which sounds abit wierd but it works as ur so tight in there coz of the inflammation and pain sometime it needs releasing...

I also went gluten and dairy free and my periods and endo pain has halved i only get pain on my period now and it not crippling pain i can deal!!

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Thank you for the reply. I am willing to look into anything. I've already booked in for a consultation with an acupuncturist, not a fan of needles being stuck in me voluntarily but we shall see!!

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Big hugs. It's quite an emotional milestone when you've suffered for so long. Xxxx

For the gas moving position frequently to stop the build up in one place and copious peppermint tea or peppermint oil massages.

Usual next step is to explore hormone treatment options unless you have severe endo and need further surgery.

You are usually aiming for complete excision, their comment suggest some was left due to time or location. At the follow up ask about this and the method of removal ( ablation or excision)

If it was a general gynae ( ie they aren't an accredited BSGE centre) and the Endo is deep infiltrating or affecting organs like bowel or bladder they will need to refer you on to a BSGE Endo centre for specialist excision.

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She basically commented that the endo she left was on my ovaries and due to us wanting to try for a baby she didn't want to touch that area. So I will see her in a few weeks and speak about the next steps. My only concern is that she is seeing me through private healthcare and after this next appointment I can't have any more private funding. So back to my GP and I worry that will mean going round and round in circles again!

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That makes sense. Perhaps then the next step for you will be TTC rather than hormone suppression.

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Yeh she said we would discuss this when I see her, as my cycles are all over the place and I was going 90+ without a period so she said I possibly wasn't ovulating. But she told my partner that the tubal patency test was clear and no reason why we should have an issue. But we are, so obviously those questions need answering now.

Having an odd day I think, the relief of being diagnosed and believed is wearing off and the long road ahead is hitting home I think

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Yes it's a funny feeling after treatment. Remember the anaesthesia will be affecting your mood, people often feel emotional and vulnerable after one, so go gently and take it easy. Give yourself time to absorb everything, rest and heal. Keyhole surgery is a big thing to recover from.

Xxxxx

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Thank you 😊 it's good to hear it's all normal!

Having never had any kind of surgery before I didn't really know what to expect. You don't really think about your mental state, more physical healing!

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Yes it caught me out too. It's a real shock to your whole system and your body will be reacting to that. I found the description of the internal healing process in this guide very helpful in managing my expectations as I never seem to recover very quickly.

centerforendo.com/is-my-end...

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Thank you 😊 really appreciate it! I struggle with pain, I don't cope well with pain at all so knew it would be a long journey!

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I used a heat pack on my shoulder and an ice pack on my stomach for the post op has pains. A lot of women chew gum, suck on peppermints and drink peppermint tea to help with the pains.

I bought Tia Mowry's book 'Whole new you', which has a bit about her journey with endo and loads and loads of endo friendly recipes. Diet is the best thing YOU can do to help improve your symptoms and lessen the progression of your endo. Buy her book, Google 'anti-inflammatory foods' for the foods you should eat loads of, and 'inflammatory foods' for the foods you should avoid.

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Brilliant, thank you will have a look for the book, whilst I'm off work and stuck to m my bed I may as well read! And will have a look at foods too. Thanks 😊

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I bought mine online from Book Depository :)

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Thanks will take a look 😊

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Hi lexii

It is emotional i remember getting two weeks after and just breaking down and i cried all day!! I was exhausted and bored and frustrated.

Just listen to ur body, i was told 2 weeks id b fine and it took me 7 to feel

Fine( im now week 8).

Have loadsa boxsets, mags and books about u so ur never bored as then u think!! Then u get emotional.

Peppermint tea. Also i massaged my belly softly after about 2

Weeks u wont wana touch it before as it will hurt u.

My stitches took 7 weeks to come out so dont freak there in there along time.

Also just rest dont b in such a hurry to get back

To normal.

Ur first period( mine came on day 5 after lap) was not as bad as everyone said it would b.

Make sure u get good pain meds .

Food... i gave up

Gluten and dairy ( gluten as i am intolerant) dairy as i dont think my body liked it so went soya milk.

It worked a treat for me... ive felt so much better since and lost over a stone in weight!

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Hey 👋

Yeh I'm definitely feeling emotional, and the pain isn't too bad, I just feel ill, my other half keeps asking how I feel ill and I can't describe it. And yes I am bored!! Never thought I'd want to get back into housework and actually going back to work so much!

Yeh they did warn me that the stitches may not come out that soon, got to leave the bandages on for a week though yet so still got 4 day to go and my belly button is so itchy!!!!

I'm still bleeding on and off since surgery, I bled for day 1, nothing day 2 and started again today. So just going with that, expected to bleed.

Still in pain with the bloody gas, which really is what has pushed me to my limits especially at night time when it feels like my shoulders are being sat on by a sumo wrestler!

I cut out dairy a long time ago, when my son was diagnosed lactose intolerant, so I did it with him! So don't have dairy. Except ice cream, I'm a sucker for mint chocolate chip!

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Buscopan can ease pain from gas. Might be worth a try.

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Hi Lexii13, its completely understandable you're concerned about what's next, especially if your GP is telling you to just 'get over it'. I'd change a GP if he/she doesn't seem professional and understanding enough. On the other hand, GPs aren't well trained in gynaecology- so it's not really their fault they don't know much about endometriosis. The official time of gyne training they receive in the UK is 10 days. Hence the GPs can't give answers to all of our questions, and sadly when they say 'just get over it, you're a woman', that just reflects their own defensiveness due to lack of knowledge- their ego blurts out insensitive things, but i wouldn't take it personally - its their issue. A lot lies in our own power to research, explore different approaches to calm down the spread of endometriosis, like nutrition, exercise, stress management. Two websites and Facebook groups i'd recommend to join for the best empowering holistic information about endometriosis are Endo Empowered and Peace with Endo. The best book i've read so far is 'From Pain to Peace with Endo' by Aubree Deimler. I hope it helps, take care of yourself x

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Thank you for the response. I suppose it's just hard to realise the people who you need the help and referrals from don't really have a clue! I'm hoping that the discharge letter from the private hospital may hold some clout maybe to help me on the way to better support now. Not really sure what I should be asking for with regards to future pain relief, further surgeries? I see the dr who did my surgery in 3 weeks so I suppose I can ask all those questions then.

Thank you for the suggestions of groups and books I will have a look today. X

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I see what you mean, i had the same concerns having gone through 4 operations. To begin, i was urged to go through IVF, which i did, and then was left with a huge infection and frozen pelvis as a result. After my last operation, i've been told only come back if i'm in pain and want another operation, quite bluntly. I asked my gyne what she thought about alternative healing medicine like acupuncture, etc., she said enthusiastically that's definitely the way to go forward, but she didn't make any specific recommendation. Probably because they're not allowed by law to recommend alternative therapies, which is understandable. So the biggest improvement i've seen is after introducing powerful enzymes to my diet, like serrapeptase, which literally 'eats out' dead scar tissue. And of course a number of lifestyle changes i've done, but that's a long story:) I started to really dig deep to what i'm eating, what exercise is best for the lower back/abdomen (in my experience, Yin yoga and Qi Gong worked best), and the toxins around us, like xenoestrogens- from shower gels, cleaning products, plastics, bleached panty liners, toilet paper, tissues, etc.

Take it easy, start with asking all the questions you have at your next appointment. But my recommendation- always do your own research before following any advice. For example, had i known the difference between ablation and excision surgeries, i may have had less problems and operations- but no one told me about the side effects, risks, etc. Doctors sometimes think they know best, but its our responsibility to make the final decision x

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Hey... we are in the similar situation. I had my op 4 days ago and ended up staying in hospital for two days due to pain.

Since my op I haven't got my appetite back and my Lower back is very painful. I think each day gets better with the sore pain. Today I woke up and it has come back again slightly just where the incisions were made.

It took three years for my doctor to diagnose my endometriosis!! Recently I requested a full medical from my GP and I noticed every month for 3 years I kept going back talking about the same pain I kept experiencing during my period! It was only until this year march I refused to leave the GP room until they found out what the problem was. Before 3 years ago I have never had any discomfort like I did. 6 weeks after demanding something to be done I went for an ultrasound and they found out I had a cyst on my ovary which was at the time about 3cm big. A couple of weeks later I saw the gynaecologist and she confirmed I had endometriosis. She gave me options... go on hormonal treatment or surgery. I said surgery straight away, I wanted the cyst gone!

I had my surgery on Tuesday and they discovered that the cyst had actually grown to 6cm 😒 and they burned off the endometriosis deposits.

It is a lot to take in I'm still looking for advice for recovery... trust me you are not alone it is nice to know there is women out there who have experienced the same thing because no one in my family understands how it affected my life for three years... I was borderline depressed!

I hope my post helps... feel free to msg me ladies xxxxx

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Sorry to hear your also going through the horrible post op symptoms! It sucks doesn't it!

Yeh I had a 'good' day yesterday with regards to pain, expect the gas. But today I feel like I'm back to day 1, laid in bed feeling very sorry for myself. And just feel ill. Flu like.

I had a curtesy call from the hospital yesterday asking how I was, and that was a good day so was fine. Wish they were ringing today!

I have cysts on my ovaries but there under 2cm so left them. But the endo was all over so she burnt what she could. I'm just worried that she left what was on my ovaries so I will still be in pain. And then how long does it take to return after being burnt? Will I need surgeries yearly? 6 monthly? Lots of things go through your head whilst your laid staring at the same 4 walls!!!

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To help relieve the gas from anaesthetic have a hot water bottle on your chest , also massages help.

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Thank you 😊 my other half keeps rubbing my back to try and help, but every time I move it moves and just sticks!

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I just put a hot water bottle on my Lower back it is helping.

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