Stuck on what to do next

[PastaGirl13]

Hello everyone, looking for some advice here if possible. I feel like I'm completely out of options and I'm really struggling to manage my endo symptoms right now.

I had my first appointment with an endo specialist yesterday and we got nowhere. Long story short, she doesn't think there is anything else I can do other than try a laparoscopy which really isn't an ideal option for me for many reasons. So basically my options are try the lap which I really want to avoid or I can just keep going as I am.

I feel so sad about it all. I am struggling with pain every day and I'm about to go into a new job which I'm so worried I won't be able to cope with it. I need support but it every doctor I've spoken to hasn't been able to do anything and I don't know what to do next.

Has anyone else experienced this? I'm just trying to work out who to go to for support. I've been to an endo specialist, my normal gynae, my GP, a physiotherapist and still have nothing. I've tried every medicine available to me. I've changed my diet. I have no idea what to do now. If anyone has any advice on how to move forward or who I can talk to I would be so grateful.

[Smiley2022]

Hi pastagirl

I feel your pain as I’m in the same position as you , I’ve literally tried everything , currently on Decapeptyl with add back hrt and still suffering .

I’m on the waiting list for a hysterectomy but the list is 18months at least , I simply cannot put up with feeling this ill, any longer , so I’ve booked in to see an endo specialist gynaecologist to ask for a laparoscopy privately

I’ve had a laparoscopy in 2018 and it worked wonders

If I were you I would have the laparoscopy

Big hugs 🤗🤗

Hope this helps in some way

Tina

[635703]

Henrietta Norton’s book How to take control of your Endometriosis will be helpful. Lots of ideas in there and it’s sold on her website Wild nutrition. The Endo supplement is expensive but very good over time.

Ultimately, you explore all options and that includes a laparoscopy with excision with an Endo Specialist. Everyone’s body is different and so it takes time to find out what works and what doesn’t work for you.

It’s a horrible disease and I have been diagnosed for 18 years. There’s not much that I haven’t tried over the years. They work to a degree at any given time. The constants have been a heat pad, tens machine. I see a Medical Psychologist and with do Acceptance and Commitment Therapy. Which includes medical stuff with meds, mindfulness, adapting to a chronic lifelong health condition, pacing, sleep hygiene, gentle walking, having a dog.

I wish you all the best as you explore things. Ultimately a laparoscopy with excision can give you relief. But I hear that you don’t want to do this. Eventually, I think you’ll come to a point where this is what you need to do. We are here is you need anything. So shout up 🫶🏻💛

[Bakewey]

it’s tough when you feel you are going in circles.

Do you want to share why you do not think a lap is right for you? I didn’t want one. I had a diagnostic lap - it made me feel terrible afterwards; however, I then got pushed to the front of the queue so 3 months later I had a total hysterectomy.

I really didn’t want any surgery but I didn’t want meds either! I weighed this up with the pain I was enduring each day and decided that for me, it was the right thing to do.

Keep talking about your options, write lists and I found watching YouTube videos helped me (as well as sharing here of course).

Good luck 🍀

[Sunset-lady]

You could go on zoladex or prostrap for 12 months if the pain is severe and you can't function. It will put you in chemical menopause which will give your endo a break- it won't cure it but it can help. You can take addback hrt too. Other than that, I'd go back to your diet and revisit what could be making it worse. I'm constantly adjusting and tweaking my regime and I'm on zoladex too. It's exhausting and some days you feel overwhelmed by it all, but keep going xxx

[M1673402]

sorry you are in pain. It does sound like you’ve exhausted a lot of options, I guess you have to weigh up your pain against the potential benefits of having surgical management. Having lived in pain for years I did find proper surgical management really helped me. I would be wary of anyone advising specific diets or supplements etc that can “cure” endometriosis. Whilst lifestyle changes can certainly help I think you have to be realistic about how much benefit they can offer. Good luck x

[ClaudiaGrace]

Hi Pastagirl13,

Great name first off. Really similar situation for me to be honest, going through a patch of pain every day most of the day, all kinds of things triggering more intense pain attacks. I also have the option to have a second surgery but am reluctant to because the first one only helped for about 6 months, because I have ‘no signs of deep infiltrating endo’ based on a very specialist scan, and because I have trauma that means the risk of having a colostomy bag is particularly frightening to me.

I would say things that have given me hope are seeing professionals that view you more as a whole person, such as the physio and nutritionist I see, and taking control with things like stretches, breathing exercises and diet like you say. If you haven’t seen a nutritionist yet as I don’t think you listed that, perhaps that’s another road to go down. I assume you have tried deinogest? This helped me for a time. I believe some people also find acupuncture helpful. Also was the physio you saw a women’s health specialist? Otherwise I can recommend one. Let me know if you find anything that gives you relief!

Sorry that you’re going through it right now, it’s bloody awful.

[EmB18]

Really hoping you find something that starts to improve things for you too. We are all different in terms of what helps us and what our bodies respond to. I never got on well with hormone treatment so started exploring other options. I tried so many things, but for me making changes to my diet so it was more anti-inflammatory and taking supplements really made a big difference, but it does take time. I also found homeopathy, pelvic physio with someone who has experience of working with endo, and managing my stress better all helped too. Don't lose hope.