Recently Diagnosed with Endo

[Random789]

Hello,

I had a lap last Thursday where the surgeon said she found mild Endo and a growth on my womb which they did a biopsy of. I’ve had all the symptoms of Endo since I started my periods in my early teens and I’m now 22.

I’m really struggling to come to terms with the diagnosis and the possible effect on my fertility or life with this disease. The thought of having to go through treatment scares me as I’m still quite young. Does anyone have any advice on how to process this? I’m feeling so upset and confused.

Thank you!

[luli26]

Hi there. I'm really sorry you're feeling upset and confused. I think so many people go undiagnosed for so long that the shock of the diagnosis can be the last thing we think about. Whilst a shock and a worry, a diagnosis is positive in that it will give you a better understanding of what is going on and how things might be managed in future. I think if you're worried about fertility, you need to talk to someone about this. Anyone diagnosed with endometriosis would be justified in asking questions and seeking out reassurance from professionals so try not to be afraid to do this.I would probably suggest you call the endo UK helpline. You can speak openly about how you're feeling and you will be speaking to someone knowledgeable and sensitive to what you are going through. They may be able to help you with some next steps.

I hope this helps and good luck.

[SJ18]

Hi, I haven’t got any advice unfortunately... only to say that I am 23 and had my first surgery last Wednesday with a very similar outcome. Here to message anytime as were both going through the same thing with probably very similar questions/worries!

[Mumsie31]

Hello Random, I am really sorry you are dealing with this. Give yourself time to process this and grieve. Just know you will come through this. When you decide you want to have children, look at all your options. Because even if you are unable to conceive, there is always the option of adoption. Sending you light and love

[Washington1]

I'm now 51 and I note that these days the profile of endometriosis and other illnesses affecting women are taken much more seriously. Years ago, you were just told to get on with it in a way that doesn't happen today. There is now an Endometriosis Awareness Week in March each year. If I were a young woman today with Endo I would take heart that there is much more research being done and far more awareness. The likelihood of more help becoming available in the years to come I would say are pretty high. This gives me much hope for women who are young like you. And there are things that you can do. I have a friend who had polycystic ovary syndrome when she was young and she was told that she'd probably not be able to have kids. She did some research and went on a particular diet and prayed. She has 3 amazing kids. For many women, the symptoms of endometriosis can wax and wane. Some find that upping anti inflammatory foods in diet help. Such as making sure you have enough Omega 3 fats, drinking enough water and limiting other foods. I don't get on with wheat, and cannot drink too much green tea without causing myself problems. Some people find that gluten is their problem. It's not easy when you have this diagnosis when you are young, but you will be ok. There are things that can help and I reckon more help will be on the way. I had a laparoscopy a number of years ago and found it ok. Sounds like you could do with a big hug, so I hope you have someone or people around you that can support you in some way. I'm sending a virtual hug your way anyway. xx

[Brambledoggy]

Read my rather rambling profile. Hope it helps. X

[ThatTimeAgain]

Hey, so sorry that your struggling with your diagnosis (I have bad endo) I saw the diagnosis somewhat a relief but it took 14 years. The main treatment is pain management & hormone therapy but it can take trying a few different ones until you know what’s right & works for you, they are quite keen on the coil. With endo Iv found pain management a massive part of my treatment plan, how are you managing pain symptoms? Fertility wise I was referred urgently for IVF as soon as the specialist knew we were trying although after the year of completing our tests I lost my partner to covid a year today. Please don’t be alarmed tho because not everyone with endo needs IVF treatment and can conceive naturally.

Talking to other women with endo is really helpful in discussing how they manage symptoms, life & sharing tips or things you could try. I’m more than happy to chat to you if you would like 🙂 x