I am getting very confused about my diagnosis. I was diagnosed with stage 1 after a laparoscopy last month. They didn't treat it because it could make it worse apparently. Have chosen not to have hormonal treatment as I plan to start IVF next year. Dye test revealed tubes are blocked but thought to be from a previous infection (no idea!). Have had problems for years but they have got increasingly worse in the last two years.
Problems are:
Painful periods, constant lower back pain, regular period pain mid cycle, ovulation pain, severe cramps when exercising and spotting, bloating, abdominal tenderness, lower right rib pain, general IBS - constipation or diarrhoea, general fatigue, nausia
All of last summer I was very badly affected by fatigue, to the point where I was sleeping all evening and found going for a short walk almost impossible. Doctor thought it was IBS (of course!) but still, most of my symptoms seem to be consistent with IBS.
They found two spots of endo in my uterosacral ligament which explains the back pain. I am really struggling with these symptoms but they seem different to eveyone elses. It's really affecting my quality of life and my relationship and I am so fed up. I am just wondering if any of you experience similar? I seem to only find cases of extremes and it makes me think this is all in my head.
Thanks in advance
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I have been in the same position as you thinking it was all in my head! Everyone’s symptoms are different, when on my period I get no pain, just pain every other day of the month.. super fatigued..bad back pain.
Argh and it doesn't help when medical professionals dismiss your symptoms either! First gynae I saw dismissed my symptoms, because I said that my pain didn't increase beofre my peroid only during. He made me feel awful. I asked for a different doctor. Hope you get some answers! xx
Hi. I had convinced myself all my pain in my head and then had mri that showed it wasn't. Your symptoms sound like endo and as the previous reply said people have different symptoms. I have the majority of the ones you describe.
Now you have a diagnosis time to work out what helps you? Hope things improve for you. Xx
Thank you! I was never offered an MRI and I am starting to wonder if the doctor that did my lap even checked anywhere that wasn't my reporductive organs. Are you in the UK? Did you have a lap too?
I hope you are managing your symptoms too and that things have imporved following diagnosis xx
Hi, I feel the same. I am still super confused about all this. I’m waiting for my specialist appointment and have not actually been probably diagnosed. Reading all the entries here make me incredibly scared of whats to come. My symptoms currently include ovulation and period pain and once a month I have a knife stabbing pain in my abdomen that sends my blood pressure plummeting and knocks me out for a day. Within the past two years my hair thickness more than halved, have gotten very bad eczema and put on a huge amount of weight even though I train regularly and eat healthy. I can’t seem to get my digestion under control and not to mention being hugely emotional all the time. I don’t know what’s part of the condition and what’s not but I do know I’ve turned from a healthy, fun person into someone I don’t recognise anymore within two years. I’m 42 so everyone makes the standard menopause comments which pisses me off big time. And because of these comments and all those GP appointments with no results I started doubting myself.
Everyone is Different and so are the symptoms, but I guess you will know best about what is normal for your body and what not. Just because your pains are not constant it doesn’t mean they are not there and don’t effect you.
Ah this sounds horrid. How long until you see the specialist? I was the same, all the tests from the GP had nothing to show, to the point where I was just praying for something to validate my complains. Only time anything showed up was in the lap. I was relived, but now I am even more confused!
I'm sorry that you are feeling like a shell of your old self - I know the feeling as I used to be so full of energy and up for doing things, not I can't even be bothered to make a cup of tea or get some food in!
It seems like there is still so much to learn about this condition, and it doesn't help that medical professionals are so dismissive all the time. I hope you get some answers soon, good luck! xx
When you say fatigue, bloating, and IBS - I know these are all known in Endo, but have you ever been tested for coeliac disease (blood test)?
Years ago I had pretty much all of your symptoms minus the period related stuff (which is new for me!) and it led to a diagnosis of coeliac disease. My fatigue, bowel issues, nausea, pain (and more..) eventually went away with a gluten free diet.
Unfortunately old symptoms now creeping back, possibly in relation to now suspected Endo.
I read that a lot of Endo sufferers try various diets to improve their symptoms, so I do wonder if these things are related!
Pain under the right rib could be gallbladder related - I have the same, usually flares up with certain foods also. The pain from that can be excruciating!
Nobody should have to put up with symptoms like this. It's not in your head. I really hope you find a way to feel better.
Thanks for your reply Budgeroo. Yes they tested me for coelic when I was having all of the initial tests, it was negative. I have been dairy free for years too as it was the only thing that cured my acne in my 20s. So at least that part of the endo diet will be easy!
They did say about it perhaps being gall baldder. It's not bad enough to investigate at the moment though, I just need to see if the flare ups are food related as you say - I think fatty foods may cause it? Have you had any treatement or investigations for it?
I hope that you're getting some good support and have a plan to see a specialist with the oset of your symptoms. Good luck with it all and I hope you have some relief from it soon! xx
1) All these symptoms and such a terrible quality of life and blocked tubes and they only diagnosed you with stage 1 and didn't treat it? Tubes can be blocked by adhesions due to endometriosis and those can be removed. I think you need to look into a tubal reconstructive surgeon and preferably a highly skilled and experienced endometriosis excision surgeon. I can provide a list of the most skilled and experienced working in the country who you can turn two for a second opinion
2) You don't suffer from IBS, you suffer from bowel endometriosis most likely. Why the endometriosis on the utero-sacral ligaments was not removed during the laparoscopy is so weird. Clearly they were not experienced because I have never heard of "treating it can make it worse". That's BS 100%. I am sorry to tell you but it sounds as though whoever performed the laparoscopy was not skilled at all
3) There are so many things you can start changing diet and lifestyle-wise. You can start a diet free from alcohol, coffee, dairy, desserts, refined carbs, industrial red meat and cured meats, anything processed or fried and choose to eat lots of fish (mackerel, salmon, cod, sardines, sea bass..), veggies (raw, cooked, steamed, fermented), some pasture-raised eggs, fruit, nuts, chia seeds, avocado, quinoa and "healthy" wholegrains, some grass-fed meat once a week or white organic meat like chicken. Marine salt, pepper, parsley, turmeric and healthy oils like coconut oil for cooking or raw extra virgin olive oil can be used too.
Drink lots of non-sparkling water, matcha green tea, herbal teas, smoothies.
Sleep a lot (9 to 11 hours per night) and get your thyroid and vitamin D levels checked out (your GP can prescribe the blood work for the thyroid and vitamin D).
Spend as much time outdoors as possible, preferably in the mountains, in the countryside or by the beach. Take it easy, learn to meditate. Take Epsom salt baths, a myofascial release massage or take CBD oil or castor oil packs for pain.
Avoid stress, plastic bottles and containers, use organic detergents and soaps, white underwear and try to spend a lot of time away from screens and pollution.
As far as supplements go, I'd suggest this one (it's a prenatal but has all the vitamins and minerals you need for endo): amazon.co.uk/Pregnacare-Vit...
Thank you Stefania for taking the time to respond with all of that! I will certainly consider the diet changes and the suppliments, really helpful info. Thankfully I live in the Lake District so I am very lucky to get to enjoy the mountains, although I haven't felt like doing as much lately. Also thanks for validating my worries!
They told me that the tubes were blocked from a previous infection (I know nothing about that) and I think they said they looked healthy. I know they took photos so it might be worth requesting those. It does seem a bit strange that it is not linked to the endo. They also told me that no one really does tubal repair anymore as it's not really that effective and has a greater chance of ectopic pregnancy, so usually they just go straight to IVF as it bypassess the tubes completely.
Do you know what a standard laperoscopy would look for? If they were to diagnose bowel endo would they have to do a different proceedure? I had to choose to go down a 'fertility' pathway for my treatment which may be the reason why they weren't as invasive? Although I just want it resolved, I had to choose which pathway and as I want children in the future this was it.
I was under the impression that they would treat any endo that they found. When I questioned this they said that it was in a difficult placy (maybe linked to fertility?) but then also that they don't have a laser at the hospital so that was never going to happen. I don't know if they would use a laser or something else. But they said it's just two spots apparently. I am so confused. I would really appreciate a list of specialists if that is okay?
They should have removed the endometriosis. Removing endometriosis does not impair fertility at all if the surgery is performed well and carefully. Clearly they were not competent and preferred to avoid touching you rather than risk getting sued for medical malpractice in case they damaged your ovaries or tubes or something.
I strongly suggest you see an extremely skilled excision surgeon and discuss the possibility of surgery with him.
Then clearly go through IVF if the tubes are irreversibly damaged. But do undergo advanced excision first because if all endometriosis is removed, the chances of a successful IVF outcome (implantation of the embryo) are much much higher and the chances of miscarriage or preterm labour much lower. It's always better to remove endo before undergoing IVF or getting pregnant naturally.
[This post has been edited in line with Endometriosis UK's code of conduct]
Yes, please please do. Preferably a surgeons working at a renowned BSGE centre and especially with lots of positive reviews from previous endo patients
Endo seems to affect women quite differently. I’ve had bad period pain with ovulation pain sometimes acutely bad, but other than that I’ve got away with less pain than other women. My problem has been very heavy bleeding which comes on suddenly and makes me feel faint and panicky, and has led to chronic anaemia. This has been effectively treated in hospital with regular iron infusions.
I was only diagnosed a year ago (I’m now 47!) finally with a lap. Just had my 2nd lap with removal of womb lining (endometrial Ablation) and sterilisation plus more endo investigations.
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