Endometriosis UK
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Severe pain, endo mentioned

After months of having severe pelvic and abdominal pain (& other symptoms), and lots of appointments where GP's have dismissed my pain & made me feel silly, my GP thinks I may have endo.

I had a large ovarian cyst with complications develop in May this year, with weeks and weeks of severe pain luckily is has dissolved on its own.

Ever since May I have had severe pelvic and abdominal pain mainly on my right side despite the cyst now gone. I have been to A&E a few times when it's got really severe, they refuse to scan me stating it's probably not a cyst again & send me off with morphine/pain killers. I saw my GP this week who said I may have endo. The symptoms fit very well. I've done a bit of research but have felt so so upset knowing it's a very long road ahead with my pain and feeling anxious about my future & possible infertility issues.

I'm not allowed on the combined pill due to a previous DVT (blood clot) and therefore this also means that anyone is afraid to give me surgery... even when I really need it!

I wondered if anyone has any advice for managing with this stage of not knowing what's wrong but also to help with the pain.

I was off work for 6 weeks with my cyst, I then managed 4 weeks at work before being off again :( , I'm struggling not to feel upset that I'm just left again with more painkillers that aren't really working, I'm currently on mefenamic acid but it seems to be giving my bad stomach aches.

I'm also concerned about work & all this time off. I work as a mental health therapist for the NHS which requires my own caseload but also me to be on form myself.

If anyone has any stories or words to help with coping with pain or this stage of the unknown I would be so grateful :) .

Thank you

10 Replies
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Hi I know exactly how you feel - I feel like my life is on hold at the moment while I'm waiting for surgery to remove my cyst and have a look for endo. It was really hard to get anyone to take me seriously, I was seeing GPs and going to A&E with pain for months, so in the end I paid to see a private gynae consultant. My advice would be to keep pushing with your GP - tell them how it is affecting your life and ask if you can be referred to gynae so they can properly look for endo. As I understand the only way to become totally pain free is excision of the endo growths however in the meantime I find a combination of cocodomol and voltarol suppositories. Zinc, turmeric and NAC with acupuncture help. That said I do still have my bad days. Hope that helps xxx

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Hi Lornajm,

Thank you for replying to me. Life being on hold is exactly how I feel, it's so hard when the people you go to help for are the people you feel don't take you seriously, I've had that experience so much.

My experience of the gynae team so far when I had my cyst was very poor. They constantly made me feel like I was wasting time & making an issue from nothing despite having a complicated painful cyst!! My GP has said he will refer me to a different gynae team in a different hospital but give this acid a month. I will no doubt have to go back sooner as it's not working & the pain in unbearable at times.

Thank you for the advice with things you've found useful. I will definitely try them xx

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It's so frustrating - I was sent away & told to wait many times but in the end the pain was so bad I ended up in A&E and being admitted onto a gynae ward. I've been off work since & will be until I have the lap and then recover. I feel like all of that could have been avoided if someone had taken me more seriously in the first place but I now feel like I've wasted hospital & work time aswell as feeling more poorly than before! If I could go back I would definitely push a bit harder and maybe could've prevented getting this far. Hope you get sorted, don't be afraid to push if you need to you know your body xxx

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That's awful, how long do you have to wait for the lap?

Its so sad to see so many of us having similar experiences of being discharged in so much pain. I know what you mean about wasted time where there could have been things done. There is too much of the idea of 'watchful waiting' and not enough action. Thank you, when I speak to my GP on Thursday I will be pushing for a referral and scan from the gynae team xx

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Hi sorry to hear you have had such a hard time and not got anywhere yet with your treatment. Are you under a gynocologist? Only way endo can be confirmed is by getting a laparoscopy which you have a right to have. It’s investigative but if they find something they will treat it. I would push for a laparoscopy, it was definitely worth it for me as the not knowing what was going on with my body was the worst x

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Hi Anyj85,

Than you for taking the time to reply to my post.

Thank you, it's a very frustrating and difficult process all this waiting, fighting to get taken seriously & uncertainty. It's seems I'm not alone in this.

I'm not under a gynaecologist yet, my GP wants me to try this mefenamic acid for a month, then go back if I'm still suffering & he will refer me to the gynaecology team. It's a lot more waiting so I may have to go back earlier than a month.

It sounds like the laparoscopy helped you to know more, I can imagine when you've got answers things may feel a little easier to cope with. I will push for one, thank you x

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Hi,

I know all too much about the pain and being off work due to it. Unfortunately, pain killers and anti infammatory medication only mask the symptoms and do nothing for the endometriosis. I know this journey all too well. I'm a 25 year veteran in healthcare. I've had Endo for many years before I was diagnosed and had developed other serious conditions in the meanwhile including dermoid cysts, fatty liver, diabetes, high cholesterol and worst acne ever. Nothing worked in conventional medicine because it only addresses the organ /symptoms not the root cause behind them. I noticed that women with endo are "yes women", meaning they don't know how to say No to family or friends that compromises her life and attention she needs to it. I also, noticed endo women carry some emotional conflict that I believe is behind the endo. unless you address these issues by finding the root cause, the healing process will be longer.

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That's what im thinking with the painkillers, I wont sort it out its just to mask them.

It's hard to get to the root cause on your own with GP's and health professionals dismissing your symptoms.

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It might be worth asking to see another GP to get a second opinion, good luck

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Hello there,

Yes, you definently need to know what the inner conflict that caused the endoemtriosis in the first place in order to start healing. This will allow the control over the pain and symptoms.

Can I ask if the pain starts after a particular stress trigger? Try to keep a log at the onset of the pain. Try to notice what is happening right before the onset of the pain by using your senses. For example, was it something you heard, saw, smelled, tasted or felt that triggered the pain?

Let me know if you have any issues with your ovaries or has your endo created other symptoms or affected any other female organs.

Let me explain, why I ask these specific questions.First, it will help us undertsand where the stress triggers are coming from that is causing the pain that allows us to do some reverse engineering. This will lead us to the inner conflict theme with the emotions, beliefs, values and the story we created in our minds that is the root cause behind the endo.

Here's an example of another condition that is easier to explain like Eczema. There are 2 stages to every disease. The stress phase and regeneration phase. The stress phase of the eczema is the dryness and itchy skin where the eczema of the redness and irritaion and the full blown eczema is actually the regeneration/body healing phase. So, this allows us to know the stage of the condition in order to know if the trigger has just passed or are we way after the stress and actually at the healing process which requires a different approach to permantely healing. Eczema has to do with the skin that has to do with touch/feeling of the skin which the emotional inner conflict would be loss of touch of a loved one or seperation from them. Like family ties that has been broken or the loss of a loved one.

With endometriosis it is a little bit more complicated because it depends on the female organs affected. In general, the inner conflict that has to do with endometriosis is about a loss or an ugly sexual argument. If ovaries are affected the inner conflict is a traumatic loss . The more female organs are involved the more it points to a specific inner conflict.

I don't know if this resonates and makes sense to everyone but I know these inner conflicts are true and are a fact because it has extensive amount of research and science behind it. As a matter of fact, I can tell you the exact inner conflict from your back pain depending on the exact vertebrae of the spine. Each vertebrae represents a different conflict theme or emotion.

I'd like everyone's feedback on this if this is bringing an awareness of what the inner conflict or emotions might be. Pay very close attention to what you're body is communicating with you so you can give it the healing it needs to stop the pain and sypmtoms.

I hope this helped and le me know how I can help you get to the root cause to start the healing process.

Lots of love to all you lovely ladies.

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