Endometriosis diagnosis

[Greenmoon27]

Hi everybody, 

I have used this forum to look for information for a while but never posted on here.I have suffered with severe pain in my stomach and other symptoms for years, whilst going round and around with doctors giving me womb biopsies, smears and IBS treatments.

Last October an ultrasound found what looked like an ovarian endometrioma, from this the gynae consultant offered me a laparoscopy which I went forward with.

I had my laparoscopy 4 days ago and with it being my first every surgery and general anaesthetic I was terrified.

Once I came round from the surgery I had a 2 min discussion with the consultant, who said she had found and used diathermy to remove endometriosis on my bladder and uterus but could only partially remove the cyst on my ovary and to get in touch if I decided to pursue hormonal medication.

I am on no contraception as I’ve had bad experiences with the implant, copper coil and the mini pill, aswell as suffering with migraines with aura.

However the consultant is adamant that I should use the mirena coil or mini pill. I have no information on what stage my Endo is, how much was found, will the cyst continue growing etc I have felt so low and upset since my surgery as it just feels like there is no relief or end goal, I don’t know the details of what Is actually going on in my body either! 

Does anybody have any ways of coping with the feeling after endometriosis diagnosis?

I keep reading and reading online about it and I’m just so worried about the future of living with endometriosis!I love to read so if anybody has recommendations on books about Endo, that are positive that would be great!

Jade x

[anonymousunicorn]

Hi Jade

I can’t comment on much but just wanted to say that empty/upset/angry feeling after surgery/diagnosis is completely normal!

Take time to look after yourself and give yourself the best opportunity to recover and get into a good mindset to then tally up your treatment options and decide what’s next for you.

Don’t pressure yourself to know exactly what will happen for you next as we are all different.

Feel free to PM if you need a chat x

[Greenmoon27 in reply to anonymousunicorn]

Hi 😊

Thanks so much for replying, it’s reassuring to know how I’m feeling is normal!

I think I completely underestimated how I would feel mentally post surgery, and that recovering emotionally is just as hard as the physical recovery!

You are exactly right, I am looking for answers for everything, but need to concentrate on recovering fully first.

Thanks so much, you’ve been so kind and helpful and told me exactly what I needed to hear x

[anonymousunicorn in reply to Greenmoon27]

100%, I think we all expect the painful side of recovery but underestimate how much you have to deal with emotionally on top of that.

Take it all one step at a time 😘

[purplevelvet9]

Hi Jade, I can completely relate to this. Dr’s try to push the mirena coil onto me although every time I’m adamant I don’t want it. It feels hard when professionals don’t really *hear* you. Sorry that you’re experiencing this!

One thing to say is continue to advocate for yourself and really push to get more information. It’s a really unfortunate thing but women do have to push that much harder with healthcare.

It also may sound obvious but make your daily wellbeing a priority. It’s a necessity imo as the emotional as well as physical part of it is draining.

Apologies I haven’t really offered anything definitive but I hope the support here helps xxx

[Greenmoon27 in reply to purplevelvet9]

Hi!

Don’t apologise at all, it’s so good to hear things from others going through the same thing, it really does help 😊

I am definitely going to prioritise my well-being the next couple of weeks, like you said I am finding it very draining!

Thanks so so much for reaching out to me ❤️

xxx

[Morty1984]

hi Jade. I had a lap 6 days ago and got the same result and diagnosis. I’m planning on trying the mirena coil (after 10 years of refusing it) just becuase the pain of Endo has been so debilitating. But it is completely your choice and shouldn’t be forced on you. Just wanted you to know you’re not alone. The weeks after surgery are always very emotional and it’s taken me time to get my head around the diagnosis as for so long I was convinced it was all ‘in my head’ or I had a ‘low pain threshold’. Sending love and strength x

[Greenmoon27 in reply to Morty1984]

Hi! I hope you are feeling and healing well after surgery, it’s such a crazy experience.

It’s so surreal isn’t it, you go years with no explanation for pain and the way you feel, and when you finally get a diagnosis it’s hard to process and your met with a range of emotions!

I hope the mirena works for you!!! 🙏🏻

Thanks for your support and wishing you a healthy and smooth recovery from the surgery! ❤️

xxx

[purpleblondie]

Hello,

I'm sorry you are going through this.

My story is similar. Diagnosed but left with no support or information. I love to read too and I have found a few things that have really helped me learn about Endometriosis, especially as unfortunately a lot of information out there is misinformation about the disease.

Nancy's Nook is a fantastic website that has soooo much evidence based information about all things Endo. I found this through a book I read by an Endometriosis Excision Specialist, Dr Iris Kerin Orbuch, Beating Endo. Find her on Instagram. There are so many advocates on Instagram also. Below The Belt is a fantastic documentary also.

I hope this helps you. I would say information is key for helping you make decisions about you health/treatment options. You know your body best just remember that. The key thing I've learned is that hormonal treatments only surpress symptoms, they do not prevent or get rid of any Endometriosis in the body.... Excision surgery by and Endo Specialist is the only way to effectively remove Endometriosis.

All the best.

[Greenmoon27 in reply to purpleblondie]

Hiya! Thanks so much for all your information, it’s really helpful 😊

I didn’t know Nancys Nook existed, it looks great, I’ve found myself in a lot of google search black holes, so that will really help!

I have read that excision is the only way to make sure it’s completely removed, which made me feel a bit worried as I had diathermy!

I think it’s going to be a long journey but will made easier from educating myself, so thanks so much for all your information and support!

X

[purpleblondie in reply to Greenmoon27]

I would say don't worry about having had the diathermy. Just focus on healing from that. My laparoscopy was supposed to be diagnostic and woke up to find out they had removed an ovary. Still trying to come to terms with that and the diagnosis myself, so I completely get the frustration and anger...and whirlwind of emotions.

You can have excision surgery in time to come. I've read about women who had several diathermy surgeries before they got excision by a Endo Specialist excision surgeon. Nancy's has a list of specialists. I've heard amazing things about an Endometriosis Centre in Romania. So my plan is to go there for surgery asap. I have to save like crazy to go but I know it will be worth it.

Keep strong.

We got this.

El

[nitz1566]

I can't comment but I believe you should do a video consultation with a specialist elsewhere like India, Thailand or Turkey preferably India for endometriosis.

[Hidden]

Hi Jade well done 👏 on your first lap operation it’s a big deal and alot of information to process while you are recovering take your time to heal from your surgery.

The only advice I can offer is I have a mirena coil it was put in last October and I am doing okay it’s localised so just in the womb so you don’t get high does if you had to take the pill. I still have cramping from time to time but my nurse said it can take up to a year to settle I had mine put in when I was in surgery to have my ovaries removed because of endometriosis. I can’t tolerate any hormones like the pill I got bad headaches depression along with high blood pressure. After your have recovered and processed all your new information the doctor gave you have a chat with a gynaecologist and if your unsure there is no rush best wishes xx