Feeling lost.

[Nolliemai]

Hello everyone,I'm new here my name is Nollie. A bit of background I've been suffering with painful periods since I was 10 and was diagnosed with endo at 31 once the pain got so bad and daily that it became impossible to work.

That was 3years ago now and I feel just as lost as I did when my doctor sent me for my first scans.

It's been an uphill battle with even being seen and chasing after people for answers.

I suppose my first post here is to ask how people cope with the endless limbo feeling. I don't know what to do, feel or say anymore. I suffer with depression but since my ability to work has be effected as well as my semiactive life (use to go to the gym 2 days a week, go hiking, long 3+hour walks and just general basic socialising outside my home) it just leaves me feeling kind of empty. I don't know how to advocate for myself or if I even should. Is this really happening or am I being a problem and making it up?

It doesn't help that last year out of nowhere a doctor at the hospital near me, in my opinion, mistreated me.

He didn't ask if I wanted a female nurse to do internal ultrasound.(I know now to ask for that but I feel we come to respect doctors and feel swept up to go along with them because they know best right?) This led for him to say without a doubt I didn't have endo, kissing ovaries or cysts (one of which was almost 9cm big). All things every other prior 6 scans had confirmed. When questioned he turned the screen to me, as if I could understand anything shown there and jabbed the probe up to show " it's all moving independently. You don't have endometriosis, just endometriosis-like symptoms."

This was so painful I'd physically yelped and clenched so hard I then got berated for clenching. The nurse in the room said nothing and didn't even look at me. I was instantly in shock and felt shameful. This was so traumatic on its own but having been a victim of SA also compounded this.

He then pulled out the probe and told me to get dressed. I had to meekly ask for tissues to get and lubricant off. Then while dressing I heard a dramatic sigh (this could of been my imagination or anxiety playing up at this point making it seem more dramatic then it was as i couldn't see him) I hurried as much as I could to get dressed that I even came out without my shoes on so I could put them on while we talked.

He continued to tell me I had no endometriosis. At this point I did question as to how it showed up with the 6 other people I'd seen in this hospital as well as my gp. He sighed again and literally put his hand to his forehead. I felt like a fraud. Like I was being a problem. He kept stressing that it was only symptoms simular to endo I was feeling, not endo itself.

I was dismissed with a comment about wearing a dress next time so it wasn't as difficult or take as long to get dressed after. I cried for hours, even days on and off.

Since then I have been told by every other doctor I've seen that it is endometriosis and I do have kissing ovaries and the 9cm cyst. However you can understand how it's completely shredded my trust not only in doctors but in myself. Am I making up this pain? Am I being the problem??

It's left me feeling... invalid? I'm not even sure, maybe just numb. Emotionally numb.

Sounds silly to ask but does anyone have any tips on what to do? Or how to cope? Because I'm barely hanging on.

[moonghost]

I'm so sorry you had that experience. My first transvaginal ultrasound was also awful (though with a woman) and I cried for days afterwards. You were poorly treated, and did not receive adequate care - you're not making it up! And the pain is also very real.

While waiting is terrible, there are definitely things you can try in the meantime. I made dietary changes and saw a big reduction in pain. I suffer with depression/perfectionism, and a lot of the time I wasn't being active because it wasn't what I used to be able to do, so it wasn't worth it. Be gentle with yourself if you can.

Seeing a pelvic specialist physio also helped me a lot, if you can afford it. Good luck ❤️

[SunnyHappyDaisy]

Firstly Nolliemae I would like to say thank you to you for sharing your story, I just don't think that this subject is talked about enough. And I am sorry you had this experience, nothing about that appointment was ok, if something feels wrong it is.

Having Endometriosis is bad enough in its self but to also have to go through quite frankly extremely invasive and degrading tests is equally as hard .

There are doctors and nurses that will go out there way to treat you with respect and make you feel as "comfortable" as possible with these procedures as they can, but it still doesn't get away from the fact of how hard it all is. Sometimes I hope that doctors will see these posts and hopefully gain a better understanding of the potential lasting impact that this can have on us.

May I ask are you under the care of a BSGE centre? x

[Tangoandmax]

I would get angry. Anger has fuelled the progress I’ve seen this past year but I had seven years of gaslighting and questioning myself prior.

I genuinely don’t think they understand the effect their words/actions have on people, I’m so sorry you’ve gone through that, it must have been so traumatic given what you’ve gone through prior. But absolutely complain. You have to. They need to learn how to speak to and treat people, it’s unacceptable! No matter how long ago it was, you’re perfectly entitled to give people feedback.

Re. The waiting. Be persistent in chasing them up for your appointment, if you can find the consultant secretary details, an email explaining how symptoms are ruining your quality of life etc. every so often might help.

The only advice I can give you, is if you don’t advocate for yourself, nobody is. Therefore, it’s got to be you. You deserve help, you deserve treatment, you deserve a better quality of life. Remember that and fight them for whatever it is you need 🤍 get angry! X

[bluebug]

I am sorry you had that experience but unfortunately I have also had terrible experiences with some doctors telling me I don't have conditions I clearly do. I also have had a community midwife giving me medical misinformation.

For example after decades of symptoms I was told I clearly had adenomyosis after an ultrasound and was referred to see a gynecologist. The consultant I saw, a woman, did a hysteroscopy and told me that I couldn't have adeno. She then grumbled throughout the appointment and made another one for me to have a mirena coil even though I informed her I had serious side effects from progesterone so had been told by other doctors not to have a coil. I left the appointment feeling terrible and that the doctor was useless.

Anyway I did go to the second appointment. The doctor overseeing that appointment was more junior but extremely helpful and much nicer. She didn't insist that I should have a mirena inserted after I explained the side effects I had had with progesterone. In fact she didn't seemed surprised to hear about it. She told me what blood clotters and painkillers with doses to try, plus different treatments considering I had had the children I wanted and when I should asked to be referred back.

Point is unfortunately it isn't rare to meet doctors and other clinicians who simply aren't professional.

Incidentally I have a friend, who is a consultant doctor in another specialism, who deliberately doesn't tell other medical staff who she is when she is getting treatment to see if mine and others stories about poor treatment were as common as she was hearing. She found they were true as she has received similar treatment. In some cases she has drawn rank to shut people down.

This shows there is nothing wrong with you and everything wrong with them that they have to bully and dismiss a patient because they can't be bothered to do their jobs properly. If you have a chance to verbally and privately warn people who they are, then do so. Do not be afraid of telling the GP who referred you about this specialist's behaviour. Also if you need more treatment ask to get referred to somewhere different.

[Runninggirl17]

Hi, I'm so sorry to hear that you had such a traumatic experience, especially at the hands of professionals we are supposed to trust. Just so sorry you were treated that way. You were most definitely mistreated. That Doctor should be ashamed.I have severe endometriosis that has spread to my bowel. It took 10 years to diagnose, despite me going back time and time again to the GP with extreme pain. I've had a giant fibroid across my uterus, which was removed with surgery, polyps and hyperplasia. I was given 3 biopsies for hyperplasia, all of which were excruciatingly painful, with no painkiller or anaesthetic offered. I can barely compare with what you have been through, but I know I came away feeling awful and that it shouldn't hurt that much. What you went through sounds so traumatic.

I am in pain most of the time now and now I'm older (41) it seems to have intensified.

I asked the wonderful people on this site for pain management and received some excellent advice. I am on naproxen pain killer (need to take with omeprazole for stomach lining protection). There are other ideas too - hot water bottle and sleep are great, plenty of water, Mediterranean diet. A diet rich in anti inflammatories. I am currently reading the good guts diet by Michael Mosely to see if that helps. Try to avoid processed foods, sugar and alcohol as much as you can (easy to say at Christmas time hey!). There are other painkillers out there too.

Please be assured you are most definitely NOT making up this pain. It is debilitating and just life imposing. I am thinking of giving up my teaching career after 20 years, as I find it too painful to work. It definitely makes your mood low. It is real and the pain is unbearable.

I have heard that Doctors are being trained for longer im gynae now to highlight the symptoms of endometriosis. This feels me with hope for women in the future.

Please do go back to your GP and ask to see a different specialist gynaecologist. There are some good ones out there, just awful that you experienced a terrible one. It sounds like lots of professionals have diagnosed you with it, they seem to know more than the one you had a bad experience with.

There is so much help on here, so please do reach out, as you are.

We shouldn't all have to suffer like this. Please hang in there. Sending you gentle hugs and love ❤️

[BloomingMarvellous]

Hi Nolliemai,

Trust you, you are truthful with yourself and you are the best person to stand for yourself.

You know your experiences, prior scans and you also know the effect that sexual assault has had on you. These are all tough, difficult real issues to carry with you. How we cope when pushed beyond of our window of tolerance can either serve us , swing into hyperarousal fleeing out of fright and hugely aggressive or into hypoarousal where we go numb, freeze and super doubt ourselves. If a medic is pushing you towards either then that's a firm no. You needed them to stop whatever the reason and you are entitled to appropriate care. So consider this he is asking you to lie to yourself and to the other medics for what ? Make him look good, or persuade yourself that somehow you are bonkers ....??? Well rock on mate because his ego apparently is more important than your welfare and that stinks. One way to reclaim your sense of balance maybe to write and communicate how this appointment made you feel. He is the one that is confused and whose actions are inappropriate and being told that is a way for you to hand it back to him. It's not yours to carry.

All that said I hope you've also had good support, therapy to help deal with the sexual assault. Often women who've been abused find the medical interventions etc, the day to day pain even harder to cope with because it also awakens the body memory of that assault. The pelvic floor is a key storage tank so it seems for past pains and experiences so it's a pre charged system that just will be far more sensitive. If you've the stomach for exploring this my lovely pelvic physio recommended The Body Keeps The Score. It took me a long time to read because it was so close to the bone but I feel more seen and heard by reading it and can take better care in advocating for myself with the endo care. It takes time to digest and accept. It takes time to know that both abuse and endo needs the care and love to be managed.

You aren't going crazy you were poorly treated and that needs to be resolved so you get better good care . All the love 🧡

[Rainbow2468]

I'm so very sorry to hear this, this is appalling treatment. If i were you I'd complain to pals and asj for a second opinion. Sending you a safe hug x🤗

[JOSANDY40]

I believe strongly you have Endo. Not all Endo can be seen. Usually in stage 4 there is distortion shown. Some is only discovered when a lap is called out or samples taken. Usually Endo does have colour white, yellow, red, black. A cyst above 4cm is on the list for removal and at 5cm and above definitely. Cysts can range in types with solid or liquid areas, some even with teeth and hair in. I've had various types. One was at 5.5cm as solid on scan but 10cm found in Operation with the rest liquid.I can understand very well your heartache. Depression doesn't help and support is most important.

So girl power is important. Positive thought and mirror talking and inforce smiling in the mirror to reinforce to tell your brain things aren't as bad. After practicing this many times over wks your brain will be a lot better. This I learnt after someone helped me with my depression.

Hugs to you.

Love yourself . x