What now? How to get on with my life?

[Abbey5924]

Hi all!

Back for an update and honestly some guidance.

I'm 19 (almost 20) I had my lap on June 26 2018 and had my follow up gynae appoinment last month. Lap went well with Endometriosis being officially digognosed and removed with most of it being on my right side. (this is where I have my chronic pain)

Post lap nothing has changed in terms of my side pain. It is chronic and pretty much 24/7 with flare ups during the week of ovulation and periods. I was put on Levlen (the pill) before my lap in hopes it would help. I take it back to back not taking the white pills, so I don't have a period for months at a time. Though I did stop having a period everything timing wise is the same, I usually ask my friend to send me her cycle calender as we sync up to know when things are going to get nasty.

Anyway, sorry babbling here.

I met my gynae for a follow up and spent some time speaking to her about everything for her to tell me that unfortunately I am apart of the unlucky percentage of women whom even surgery did nothing for and that the pain I experience from it is classed as chronic pelvic pain and is currently untreatable. As you can imagine and for those who have been through the same is was quite upsetting to hear.

I was then put on Medroxyprogesterone to stop my endo from growing back.

Long story short iv lost faith of things getting better. My mental health has suffered along side it all, things are low.

I couldn't complete my Uni course because of the constant pain, nausea and fatigue, can't find a job for the same reason. Work is my main concern, as at 19 I need to get things rolling before it's too late, I need to be able to start my life and yet I don't know what to do. No one wants someone who can barley work. Expecially here.

Once again this is a lot longer than intended, guess I really needed the vent.

Any advice or personal experiences is greatly appreciated.

Also take some time to have a vent yourself if you would like, all love here.

Thank in advance xx

[AllthatGlitters]

Hi Abbey I totally understand where you are coming from, some days I don’t know whether I am coming or going. I really do think that people who don’t have this condition fully understand what it means for us and what we have to go through. Even my last employer didn’t get it, shame on them as they were all female managers! To me they should know better, do some research so they learn how to deal with female employees with Endometriosis and Adenomyosis & support us women.

Some days I am so tired & have no energy, it makes it very difficult to work and I lost my job. I worry about the future but what can we do?

I think the government need to add these illnesses to their existing conditions of debilitating and disabling diseases/medical conditions.

I don’t teally have much advice as a lot of the time I don’t know what I am doing myself, however you will be supported on here as we all understand how you feel.

That’s my rant over!!!!!!!!

Hope you are having a good day and pain free x

[Abbey5924 in reply to AllthatGlitters]

Hi there, thank you for replying!

Yes I couldn't agree more. Things would be incredible if only people were educated.

People on this site are gorgeous, I would be lost without them.

Feel free to come rant or vent at any time and I hope today is good to you, much love xxx.

[Hidden]

Hi Abbey, I’m sorry to hear you are suffering still, but sort of relieved to see I’m not the only one with unchanged ongoing right side pain after lap. Mine was almost five months ago but the right side has just not stopped hurting. I keep being told to wait longer and longer as healing takes a while, so I was interested to hear a doc had told you so soon it was ‘just’ untreatable chronic pelvic pain. I can’t really offer medical advice, but know you are not alone in feeling frustrated and down. The only thing Im putting my hope in now is gentle hip stretching, kegels and getting back into cycling as a way of maybe building the strength of abdominal muscles and possibly easing some pain, but it’s just my wild, no options left sort of guess. Good luck.

[Abbey5924 in reply to Hidden]

Thank you for replying!

I'm sorry that it's bad to say but I am glad that I'm not alone.

Thank you for the support and exercise ideas. Will definitely look into it.

I suppose my only option is time, but I know I don't have it on my side.

Thank you again! Much love xxx

[Lily1985]

Hi Abbey,

I also totally understand where you are coming from. It's a nightmare isn't it?

I take it that you live in the UK?

It's very difficult in the UK as there doesn't seem to be any support in terms of unemployment due to chronic illness.

Please correct me if I am wrong though.

I used to live in Scotland until 2 months ago and found it very difficult with the NHS waiting lists, no help in terms of employment issues due to chronic illnesses. And I am also severely asthmatic, have allergies and I am in constant pain with the Endometriosis.

I have always worked during my 8 years in the UK but in the end couldn't keep going.

My bosses where very annoyed whenever I needed time off to see a doctor and one fired me after I had a surgery!

In the end I couldn't take it anymore and left to move back to Germany.

Here are thankfully no waiting lists for surgery and every woman has her on Gynecologist that she can call and go to on the same day!!

It's amazing! Here you also get a disability status with chronic illnesses like Asthma and Endometriosis and this protects you at work too!!

I wish they would do that in the UK.

Do you have family or a boyfriend that supports you? It's so important to have people around you that care about you and support you.

In my case I have two sisters that I am very close to and one of them also has severe Endometriosis and has had a lot of surgery and now has a disability status of 60%. She no longer can work.

I wish I could give you some good advice.

All I can say is to be with people who support you.

The people on here are amazing!!

So grateful this site exists.

Hope you're having a pain free day.

Greetings from Germany 😊xx

[Abbey5924 in reply to Lily1985]

Hi! Thank you for replying!

I actually live in Australia, which makes it difficult as not many people here are.

That's shocking about your boss! But I can believe it, the amount of disrespect against this community is honestly discusting.

Honestly I wish our government would do more but is is still seen as an excuse.

I have my family and I have some of the most amazing friends who even consider themselves family by my side.

Thank you for your words, again this community is gorgeous.

Much love xxx

[sarahsarah123]

Hi Abbey, sorry to hear you're still suffering. I just wanted to say- many women still experience pain if their endometriosis was only ablated (sometimes doctors say "zapped or burnt off"). If it was only ablation, you should try to find a surgeon that performs excision before you accept a life of pain! Many women I've heard had continued pain or even worse pain until they had their endometriosis properly excised (so cut out at the root, rather than just having the top burned off- imagine endo is like an iceberg!). If your endo was properly excised and you are still in pain, you could look into any other other pain generators- perhaps find a pelvic floor physiotherapist? Sometimes if we've been in a lot of pain our pelvic floor muscles get out of whack, and need physiotherapy to alleviate the pain. Just some ideas anyway good luck! x

[Abbey5924 in reply to sarahsarah123]

Thank you! I will have a look into all these. Thank you so much for replying, much love xxx