had a laparoscopy and no diagnosis what do I do ???

[123uk]

So Im 23years old now but have suffered for a long time when I was 12 years old I was rushed to hospital with bad pelvic pain they thought it could be my appendix when that came back as clear and the pain left I was then sent home after I then sterted my period a month or two later, the pain worsen month to month and wish during or before my period would start for years I was going to hospital and know one new what was wrong with me I was given a lot of medication over years to help with pain management.

when I was 15 I was diagnosed with a blocked bowl and iBS I would struggle going to toilet and my bowel ended up storing the poo for weeks as free staying in hospital for a whole month it was cleared but the struggle of pain hasn’t gone away, when I was 16-17 I started getting kidney infections and water infections all the time some frequently that I was on antibiotics for over a year I lost me job for constantly being off and again still suffering for my periods.

when I was 17-18 I satarted getting pain in my chest heart and left arm thinking I was having hurt attacks I was constantly being rushed up ER after 2 years of tests they found I have a 3.6inch sliding hiatus hernia whith GERD and no valve, but from all the years of medications I got where even paracetamol would make me feel very ill so no medication was worth taking as I would get all the side effects that came along with it e.g bloated stomach, sickness,drowsy,pain in stomach. They have refused to operate because of my age and The complications from it.

When I was 20 I started getting pain after going to toilet in my pelvic area and in my lower back and started noticing how out of sink my periods where anywhere from 27 days to 50 days some random spotting of blood after sex and after going to to gp finding out it isn’t normal to have pain during and after sex !! The pain I get is a deep sharp pain the travels in pelvis into my stomach that’s can make me feel sick to the stomach with all my other issues as well I felt completely demotivated i had a ultrasound and they found I have pcos with cysts on both overies but none of the symptoms what matched with pcos so my gp got me on the waiting list for a gynaecologist which has taken a whole year.

so In the mean time I have gone to a private diet person she had found I had many food intolerances and I have gone on a complete diet change and reduce my stress in my life to the best of my abilities I have lost 4 stone in weight over the last year and have been able to reduce a lot of my other symptoms but it’s only highlighted how bad my periods still are and the constant pain I get in that area after seeing the gynaecologist after a year of waiting he said I could have a bladder problem or endometriosis after looking at symptoms of endo I felt a relief as I had Everything on the list and I finally thought I had a diagnosis after another ultrasound nothing showed up and yesterday I had a laparoscopy surgery where I was told everything looks normal and nothing has showed up and I have a follow up appointment 3 months.. I feel very disheartened as the only thing the doctor said was to make some life choices like diet change or can go on antibiotics for the pain when weeing 😩 but after making such a massive lifestyle change already and really trying to live as healthy of lifestyle and stress reduced as possible I feel very upset as I really feel I have endometriosis and I don’t what to do I’m gettting married next June and wanting to start trying for kids but at this point i feel like I want to know what’s going on what can I do to get the diagnosis?? Has anyone been misdiagnosed or is endo always seen on a laparoscopy? Sorry for the life story but feeling very depressed right now 😞 any help appreciated.

[CryBaby91]

Hi 123uk

Yes endometriosis can be missed on laparoscopy ops! Especially deep infiltrating endo (DIE) which hides really well, usually spotted on MRI scan by a specialist! Are you seeing a specialist? Or general gyne?

Btw your story sounds identical to mine, it may help to know I was finally diagnosed with endometriosis August this year after seeing a specialist. I also had the appendix hospital trips pre periods starting (but it was never that lol). Please keep pushing for answers and do not be fobbed off with "change your lifestyle". Though these things can help to REDUCE symptoms they don't guarantee them to be cured.

Might sound daft but what non medical pain relief are you trying? I don't want to list loads of stuff if you've already done it haha. Xxx

[123uk in reply to CryBaby91]

hi so I have cut out everything I shouldn’t eat from food intolerances which is a lot of food (wheat,gluten,egg,diary,rice,potato,almond,oats,rye,corn, peas,broccoli,tomatoes,onions,garlic) and then because of my hernia I can’t have anything acidic so pretty big diet change this year feel 100% better for it but still hasn’t made a big effect on the pain I get, Last year I quit my job and now work for myself so have reduced so much of my stress the only thing that seems to take some of the edge off is hot baths and rest but i obviously just want to be diagnosed so I can get the help I need I’m so happy for you that you got diagnosed must be a Massive relief any help we’ll be welcome thanks 😊

[CryBaby91 in reply to 123uk]

So there's things like TENS machines, which are not a cure by any means but definitely do take the edge off the pain (depending on location). Don't spend loads of money on your first one! Just get a cheap £20 one and see if it helps, you can buy them on Amazon. If heat helps then I can highly recommend buying a plug in heated pad! I lay down on mine and it helps my back and pelvis loads. I also have some regular hot water bottles and some long ones for my legs. There's also rechargeable hot water bottles, wearable heated things and other devices which produce heat and vibrate. I haven't tried those! But i am tempted so thought they were worth mentioning.

BeYou patches have a good reputation, personally I didn't have any results with them but I have heard good things.

CBD oil is also highly recommended by lots of good gynaecologists. I would suggest speaking to a GP or other medical professional first. But I started low and moved my way up to higher strengths. It can be good for inflammation

Yoga is FANTASTIC for pain. I do stretches and lots of massage, it has a really relaxing benefit too, being tense makes pain worse.

If you like baths I massively recommend Epsom Salt or Magnesium salt. Both work the same great for sore muscles and general fatigue.

You are obviously doing all you can diet wise so I won't mention that haha but please remember that none of these things are 100% guaranteed, otherwise we would have a cure wouldn't we. It sucks it really does. I've found that if you aim to REDUCE pain rather than completely get rid of it, that you are much less disappointed and the results are often more realistic.

Keep pushing for decent answers, but until then do all the research you can and just try take your health in your own hands. It is sad that we have to advocate for ourselves so much, but for now that is the world we live in. Stay strong, if you need any advice feel free to reach out xxx

[BloomingMarvellous]

You have had a lot to contend with physically and emotionally with all the issues and the unresolved, multiple problems thrown at you. Have to say one of the most difficult things on this journey is not only the struggle to get a grip on what’s going on/ treatment/pain etc but the ensuing stress that comes with it. Stress in itself can make both the allergies, endo,PCOS and pain physiologically more difficult to handle. So round and round we go with more issues. Sometimes the help with these issues comes from less apparently obvious quarters and worth a try to assist. My two favourite ways to deal with the consequences are really good pelvic physio specialists ( ask your team for a referral perhaps ) and the Curable app. You can do both alongside your treatments without an issue and hopefully might help you feel more at the driving seat as you navigate the medical side. X