Finally a diagnosis, it's endometriosis :(

[dinzel]

Hello all! I am a new member but I have been reading up on various posts before I decided to join officially.

I received a diagnosis for endometriosis on Thursday this week. This came about after having years of generalised seemingly unrelated symptoms, including unusually painful periods, severe ibs, joint pain, chest pain and a long list of other things.

I've never connected the dots before and it's dawned on me that this has been going on ever since I started my periods at 11 years old. The symptoms have become more widespread and debilitating as I've got older and now at the age of 36 I finally have a diagnosis.

The thing that got everything moving was pain when urinating which started over the past two months. I got fobbed off initially with antibiotics and told it was a UTI, despite a urine sample showing only slightly raised leukocytes. I was told to come back if the pain persisted, which it did. Luckily I ended up seeing someone who listened this time around and they referred me for ultrasound.

The US showed bilateral complex ovarian cysts, they appeared to be small at 3cm on the left and 2.5cm on the right. From there things have been moving fast after a CA125 blood test amongst many others I ended up with a fast tracked referral to the womans unit at Stepping Hill Hospital.

They initially suspected ovarian cancer and couldn't see the cysts clearly enough to make a diagnosis from the US, so booked me in for an MRI. The MRI has shown endometriomas on both ovaries, the left is enlarged at 5.6cm by 3cm and the right is oddly small at 3cm by 3cm including the endemetrioma. There is a lesion on the uterosacral ligament on the right side which appears to be touching the bowel in that area and is possibly also interferring with the ureter on that side.

The consultant (who isn't an endometriosis specialist) gave me the choice of leaving things as they are and coming back in three months or a laparoscopy with removal of the endometriosis lesions and endometriomas. They think my left ovary may have been consumed by the cyst, so this may need to be entirely removed. I have been advised that the damage could be more extensive so I may need a second op with a specialist if the consultant can't clear everything herself.

I opted for the laparoscopy which I do not have a date for yet, along with a mirena coil to slow down regrowth. After so many years of pain I am fairly desperate to just get this looked at properly.

Unfortunately I've got a long history of very bad reactions to hormonal birth control. It's been ten years since I stopped using systemic birth control after femodette almost drove me to commit suicide. I have bipolar 2 which is under control these days and I seriously fear that any hormonal treatment will really set me back. I very nearly burst into tears as soon as the combined pill was mentioned. Is there any way to just have the laparoscopy and no hormonal treatment or will this render the op pointless? The consultant advised that I had to have follow up continual hormonal treatment in order for the op to have any lasting effect.

I have other symptoms (extreme fatigue, chest pain and RA symptoms in my hands) which I need addressing and I don't know if I should have discussed these with the consultant or if I am best telling my GP.

I'm feeling overwhelmed by all of this at present and just need to tell someone.

[Vvvji]

Hey dinzel, Im sorry to hear about the symptoms you’re experiencing and hope that whatever procedure you choose will improve things. Im 21 and was diagnosed with an endometrioma last year (by accident). I had an ultrasound 6 months ago to find that it had grown to 5x4 cm. Its been causing me alot of worry since but I am awaiting a gynaecology consult next month.. I get that you’re overwhelmed and hopefully speaking about it & hearing other people’s experiences help you get through it. Xx

[dinzel in reply to Vvvji]

Thank you for taking the time to reply and share your experience with me. It really does help to know that I'm not alone in this, as much as I wouldn't wish this on anyone! I hope your referral comes through soon and think it might be a good idea to ask for an MRI if they don't offer one. They don't normally offer them and only did in my case because they suspected ovarian cancer, but it has helped to finally identify my illness. If you've not seen it already, I would urge you to take a filled in copy of the Consultation Questionnaire from the Endometriosis UK website endometriosis-uk.org/seeing... I wish I had found this before my first referral meeting, but I didn't have a diagnosis at that time. I will be printing this off and either giving it to my GP to scan onto my records or I'll drop it off at the hospital when I go for my pre op assessment next week. This will hopefully help you to get everything you need to discuss with your consultant down in an organised manner so they can pick up everything on your first visit. Good luck and let me know how it goes!

[MTL2008]

Hi!

It is my understanding that you can follow a special diet to ease the symptoms and control your hormones. Not every body reacts in the same way though. I would suggest to read “Period Repair Manual” by Lara Briden (tons of info about hormones) and “Endometriosis: Health and Diet Program” by Andrew Cook.

I haven’t been diagnosed with endo yet, since I don’t have all the symptoms, but I read a lot of info about it and most of the time it all goes back to having a healthier lifestyle in order to feel better.

I wish you all the best.

[dinzel in reply to MTL2008]

Thank you so much for your reply and recommended reading. I follow a vegan diet and have for a few years whilst paying attention to my ibs symptoms, so this may help to assist me further. I have decided to at least try birth control pills one last time to see how I manage and if it upsets my mental health too much I'll focus solely on diet options instead. I realise this is up to me to deal with outside of any medical intervention, so I have to find a way that works for me and give me a decent quality of life.

I hope you can get a diagnosis sorted soon, even if it's not endometriosis. Endo has so many far reaching symptoms which mimic or bring about other seemingly unrelated illnesses.

[Thecraftyadder]

Firstly congratulations on getting someone to listen to you. I was finally diagnosed last year at age 37. I have it in my right utero sacral ligament. It does cause bowel issues and was causing bladder problems before I had my surgery as It was so close to my ureter. I hope you have a specialist doing your surgery. Excision surgery (not laser) will give you the best chance. Yes it can come back but hormones don't actually stop that, they can just suppress some of the symptoms.

I have never been successful with hormones but gave the mirena a go at my surgery because I felt I had to. I knew it was about 50/50 in terms of if it would help. Unfortunately it badly effected my mental health so I had it removed after 11.5 weeks. It took about another 3 mths to get myself adjusted against once off the hormones . I don't want to scare you but please be very careful in view of your pre existing issues. Make sure that you have a doctor's agreement to remove it at the first sign of problems. My GP did it for me and has warned me to not go near hormones again. I'm using diet, supplements and exercise to help my body but my excision surgery has made a big difference in my ability to manage my symptoms. Id second the recommendation to read Lara Briden's book. Its very informative.

I hope you get a date for surgery soon and it helps. Remember it is your right to choose if you want hormones or not. Discuss your options with someone who knows your full medical history so you are supported whatever you choose to do

[dinzel]

Thank you so much for you reply. Your reply really does help as I also felt coerced into agreeing to the coil. I've got my pre op assessment at the end of this week, so I'm going to tell them that I no longer want the coil.

I will at least give hormonal treatment one more try but I'll go for the pill as I know I have more control over this and can stop at any time if causes too many other issues.

I have booked an appt to see my doctor and will discuss with pill and my past history with them in detail.

The laporoscopy is going to be carried out by the consultant I have been referred to and it will be laser ablation, not excision unfortunately. She has already said that I may require further surgery with a specialist in respect of the bowel and ureter/bladder involvement, so this seems like the only pathway available to me at present.

I will definitely be looking into the suggested reading right away as this may bring up more detail I need to bring up before my laparoscopy.

I'm relieved to hear that you have been able to manage your symptoms without hormonal treatments as this may be the best option for me in the long term.

[tlpeschong]

I am 34 years old and have one child via c-section which is how (Im guessing) I got AWE (abdominal wall endometriosis). I have had two surgeries to remove lumps from abdominal muscles and c section scar area. I believe it is back a 3rd time. I was also negatively affected emotionally and mentally by birth control pills. My Dr recommended the IUD because she said then the hormone goes straight to my uterus and not through my whole body. I am now on my second IUD (lasts 5 years) and can say it doesnt affect me emotionally. Most months I have no period or just a light one so my endo pain is greatly reduced. Im hoping the Mirena slows down the growth of the endo enough that I can wait many years before another surgery. It has been 7 years since my last surgery. Hope this helps?...