Feeling hopeless

[Peachii]

Hi guys,

I've really appreciated all the help and support you guys have given me in the past and was wondering if I could have some more encouragement please!

Just had a follow up gyne appointment after a scan showed my right ovary had adhesions and was joined to my womb.

I feel like I had the most unsympathetic doctor in the world, she didn't introduce herself, and said that they believe I have endometriosis and that I would always have this pain, and be in this pain my whole life even if I have the surgery, telling me that the majority of people don't improve and they most likely won't be able to get rid of all the endometriosis without damaging my organs.

I asked her if there was any other options and she was very bleak, saying that it's a chronic pain condition and they can't cure it. She honestly drained me of all hope. I had to lead most of the appointment else there would be silent pauses and when I did ask for more info about the diagnostic lap she said that because of my weight (I am big but not morbidly obese, still live a healthy life style, have an active job and do lots of yoga and walking) I'm a high risk and I need to lose weight before my appointment. I was very open and said I'd happily lose weight but I need help and advice along the process due to my pain, we then spent about 3/4s of the appointment talking about weight loss and I explained that over half the month I'm in agony and it takes too much effort to do high intensity work outs on top of 9 hour shifts at work/ university/placements etc. And she just told me to take pain killers and to get on with it, asking if I "have any other fat friends who i can lose weight with". I asked for pain managing advice and she just told me to carry on with pain killers, asking me why I was crying so much and when I explained I'm struggling with the pain she gave me no help.

I asked her if I might be able to have painless sex after the surgery (I was hoping for at least a possible improvement) and she just said it'll probably start again. Suggesting dialtory therapy to increase the size of my vaginal passage but gave me no indication on how to access this help.

Sorry for the rant I just feel utterly hopeless, I've been sobbing for the past couple hours since I left my appointment. I've seen so many positive posts online but I am just so shocked that a medical professional will leave me with such little hope or help.

[RicEndoUK]

Dear Peachii,

I am very sorry to hear that you've been treated like this and left feeling so low.

If you feel you want to complain about the care you have received and are on the NHS, you can complain to PALS (patient advice and liaison service):

nhs.uk/common-health-questi...

Do you have a sympathetic GP? You could go back to your GP and get referred to a pain clinic:

nhs.uk/live-well/healthy-bo...

At the same time, the GP may also be able to help with the weight loss in conjunction to your pain management:

nhs.uk/live-well/healthy-we...

If you feel like you need some additional support and someone to talk to, Endometriosis UK do have a free confidential helpline staffed by volunteers who have experience of the condition. You can find more details on the opening times here:

endometriosis-uk.org/helpline

Please take care and don't lose hope - many people do find relief from treatments, including surgery. Whatever happens, we are all here to support each other though all of this.

RicEndoUK

Volunteer Moderator

[ChloeV]

Hi. You have already been given really good advice. I just wanted to say that I read your post, and your pain and frustration sound really familiar. It is so hard to feel heard and get your questions answered thoroughly. It can be really disheartening, but you are not alone. There are many of us out there to support you and hear you out. Hopefully you will get some solutions following the advice and soon be under the care of a better doctor. It is all you deserve. All the best.

[Missy100]

Hi Peachii,

I am so sorry to hear you had such a bad experience with your appointment.

While your Dr seemed to be matter of fact and heartless, sadly their direct approach seems to include some horrible truths of this awful condition. This said, please do not lose hope as there are different things you can try to help ease symptoms and help you cope.

Is your gp more helpful and understanding? They can 1. Prescribe medications to help with pain, birth control which helps ease symptoms in some people with endo (be aware of risks and possible side effects of you explore this option), medication to help with bleeding if you have this in excess, and possibly more. 2. You can speak to them about visiting a nutritionist or if any healthy eating or weight loss and/or activity support programs are available in your area that they recommend or can refer you to. If you feel you may have any emotional eating habits they may be able to offer suggestions of support for this too. Weight is such a personal and individual struggle and what affects or helps you can often be very different than how it is for someone else. Also, despite best efforts it can often feel like a bleak situation that never changes and for which we constantly get prejudge and pigeon holed for. 3. If you are unhappy with your appointment, how you were treated and the care you received, you are entitled to a second opinion in the UK. Ask your GPntonrefer you to a different gynaecologist. If you chose to go down this route there are gynaecology teams that specialise in endo and if you look online you may find one near to you that you can ask to be referred to. Also, in the UK you will usually see a consultants team so it is very possible that the next time you go in you could possibly be seen by a different member of the team who may be more helpful. Personally I had a horrible experience with the team at my local hospital and it was only after being referred elsewhere that I felt heard and received explanations and felt I got anywhere. But it has been a very long process that is still ongoing.

In addition to the above: 4. Don't keep it bottled up. Whichever you find most helpful - forums, online groups, support lines, a mental health professional, a physical support group, an understanding friend or partner, etc - utilise the support networks you have access to. We all have good and bad days and it is important to support each other. 5. Many have found benefits in none medical treatments for some symptoms including yoga (or other stretching based activity), some forms of relaxation meditation, endo targeted diets which exclude certain food groups, etc. 6. Sex. Do you have a permanent partner that you can approach this with? This can be such a disheartening and frustrating situation, to put it mildly. Relaxation. Intimacy. Pleasure rather than penetration being the goal. Exploring different points in your cycle (if you have any regularity). Trying insertion only when fully relaxed, after lots of foreplay, and in shallow depths as a tease (reaching orgasm in other ways) and over time working forward. Experiment with different positions as some may be much less painful than others. Do you trust your partner to have control? You may find taking control helps ease anxiety of too much, too fast. Vaginal dilators, if you choose to explore, typically come in a set of various sizes which you slowly work your way through over time. You can purchase them online from a variety or sources (even Amazon and eBay!). Most importantly of all, communicate with your partner and try to find things that work for you, rather than what you feel you 'should' be doing. Lucky 7. Be kind to yourself. This is not an easy thing to be dealing with, especially as there is no easy one for all solution. Give yourself the credit you deserve for the daily struggles and for trying to find help.

[Krithika]

Hi, I’m so sorry you’re going through this. What kind of doctor did you see? I recommend 2 things right away which really relieved me of all of this pain. Please have hope.

1. Join Nancy’s Nook on Facebook and learn everything on there - it’ll change your life

2. See an endometriosis specialist who does excision surgery, even if you aren’t interested in surgery because this type of doctor will know exactly what you’re going through and may offer advice that will actually help you out. They’re normally not covered by insurance but there’s more info on Nancy’s Nook on how to appeal to insurance and get coverage

[Doggiedogmom1973]

Hey, seriously, your Dr is just simply unaware how uneducated towards endo he/she is... Its as simple as that. This book would be worth the investment for your entire understanding of endometriosis, if you've both been struggling this long. Its written by one of the TOP surgeons in the world: The Doctor Will See You Now. Author: Dr Tamer Seckin, M.D. drseckin.com/the-doctor-wil...

I hope this not only helps but changes your life for the better.

[Peachii]

Hi all, sorry I've been away for a couple of days. I just wanna say thank you very much for all this info! I've decided to put in a complain (as I'm under the gyneological team with my local hospital and see a different person each time and don't want to encounter her again, but also so the hospital I'd aware she might not be the best person to be talking to vulnerable and scared people). I went back to my gp who specialises in women's reproductive health, so she luckily sees a lot of patients with endo and she eased a lot of my worries, explaining that because it's such a new and unresearched disease some of my questions about pain, fertility etc were hard to answer but educated and sympathized with me as much as possible. I talked to my gp about the weight side of things, and she said 1)it wasn't her job to talk to me about weight loss as it's the anestatist who will decided that during my pre op, and it wasn't fair of her to make that the centre of the appointment when I needed help with my pain as that takes focus. She's helped me get in contact with health advisors to draw up plans that will help me lose weight before my op without putting too much pressure on me during my bad days.

Again I just wanna say thank you everyone for listening to my rant and giving me lots of advice that I'll look into further!