Im so sorry youre going through all this, but please dont give up because you will find a way to help it if you stsy strong. Endo is often missed during surgery and its unfortunately not uncommon to do so. Have you seen a proper endo specialist or an nhs gynae? Xx
Ok, did they do your op too? In the meantime try to think anti infammitory with your diet and suppliments as it really does make a difference. That means no refined sugar, gluten or dairy and suppliments, there are loads though so youd have to do research. Your symptoms do sound like endo so wont hurt to try and treat it by changing diet etc. I get all those symptoms you have and i do have endo. They only found a tiny bit but i still get exteme symptoms. Xx
Mine were too. I take maca for mine, eases my sypmtoms and my periods come bang on every month. Been taking it for about 4 years. Also started taking a bee complex, not b, and that is helping too with pms etc..x
Did the surgeon see your appendix? In my case the appendix was hidden at a diagnostic lap. Following my recent hysterectomy, during the procedure the appendix was uncovered and found to be riddled with Endo and inflamed. They took it out with part of the bowel.
No, I stopped hormonal treatment a few years ago as my body just can’t hack extra hormones. Once I have recovered from my op I am going to be stricter with my diet (I follow a vegan and gluten free one), carry on running and get back into yoga, wean myself off of the tramadol that I take every day and book in some reflexology. Want to do it the natural way xx
I know what you mean with extra hormones I couldn’t take the pill made me worse, Good luck with the going natural keep me updated I gave up milk and only occasionally I will have pizza xx
I am so sorry about all the pain you are going through. We have been told it is possible for Endo to be missed as they sometimes have different appearances.
Also, I think while you wait, you urgently need to see a pelvic therapist. You have been in pain for so long in your pelvic region that your muscles are probably very constricted and you would need help to relax them. Pelvic therapy is often a missing link with endo and pelvic pain.
Also do you know if they had a good look at your bowels, your appendic could also be hidden under scar tissue.
I'm so so sorry and I hope you find answers. But please dont stop looking and asking for a second opinion.
i feel so sorry for you. i still have no diagnosis for my tummy pain and i have had loads of tests. it’s hard, very frustrating keep going and hope you’ve got support
I have exactly the same problem with pretty much identical symptoms.
I have endo and pcos and the are no closer to managing my pain than when I was diagnosed even after they said this coil would sort it out
I feel your pain and feel free to message me for support
I hope they sort something for you x
Hi,
Really sorry you’re going through this.
I have similar symptoms with Adenomyosis that I’ve been left to deal with. Gynaecologist said that I would be coming up to menopause in next 5 or so years and it’d hopefully clear up then. Hmmm, 6 years later I’m still suffering and no menopause happened yet.
It gets me down at times.
I hope you have a good GP appointment, good luck x
So sorry you feel like this I hope you get things sorted perhaps you could try festers a little easier said I know but something to help you relax sending hugs
1) Changing your lifestyle always helps with chronic painful conditions like endometriosis or PCOS. You shouldn't smoke nor drink, sleep plenty (at least 9 hours per night), move outdoors, eat very very healthily (no processed foods, fried foods, cured meats, sweets and desserts, chocolate, pizza, soy, dairy, preferably not even coffee or industrial red meat. Go for fish, veggies, fruit, nuts, seeds such as chia seeds, quinoa, amaranth, corn, rice and other gluten-free wholegrains, drink matcha green tea or herbal teas and plain water, smoothies are great too. Avoid dressings other than extra virgin olive oil, vinegar or lime juice. Use lots of ginger and turmeric in your dishes).
The diet and lifestyle themselves will help immensely with PCOS and maybe with any other conditions you might have. I suggest you also get your vitamin D levels checked. I also suggest you maybe get your food intollerances checked and get an MRI done with a radiologist who specialises in endo.
Re ovulation pain, I had a hemorrhage in my right ovary in Feb 2019. I found out about 2 months later after the scan. I had a pretty bad ovulation pain on that side (in addition to overall pelvic/lower back, of another origin) for the next few months until I started Visanne. I am not sure about the mechanism of action, but now that I finished the course, the right ovary is doing much better pain-wise. I am now waiting for the next period (due in a week) to go back on Dienogest again.
I guess, my right ovary was really affected by the hemorrhagic cyst, even after it resolved 2 months later. One possibility is that Visanne let it rest and so it healed better. Another possibility is the formation of the endometriosis center due to the fact that the cells implanted into the wound on the ovary, as many women have retrograde period flow. In this case, Visanne caused apoptosis in those ectopic cells. As well, Dienogest makes endometriosis-specialized macrophages to consume the ectopic cells more actively.
I now wonder if the hormonal imbalance typical in PCOS promotes endo. My suggestion is , if you haven't yet done so, to try a hormone treatment, for a minimal duration/dose for now.
I am not saying it will solve all of the problems, but it could improve the life quality.
I also like the MRI suggestion above. Usually the implants are seen as red/blue (as veins just under skin) spots since endometrium is highly vascularized. On MRI with IV contrast, more vascularized tissues will look brighter. It should be best to try to have the scan towards the end of the cycle, when the endometrial thickness is at maximum, wherever this type of tissue is located. Even if there is little to no ectopic endometrium, the MRI scan will provide additional info about the pelvis. It's resolution is far superior to that of US.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
keep going and hope you’ve got support 
Can’t sleep 😫
Food aversion - can’t eat! 
Struggling with feeling like I’m “overreacting” whilst pushing for a diagnosis?
Does this sound like Endometriosis?
