Drained | Seeking advice

[Becky5267]

Hello there I’m so new to this type of online world. I never thought I would have to use an online chat room to talk about something quite so personal. However, I feel like I am in a losing battle. I was diagnosed with endometriosis in 2017 following a laparoscopy. It was found around my left tube and ovary. I had to battle for this surgery with my consultant for roughly 2 years as they did not believe I had endometriosis. After the surgery my lower stomach bloating went down my pains were gone. I honestly felt amazing. However, towards the end of last year I can honestly say I’ve never felt worse. My lower cramps were uncontrollable I looked about 8 months pregnant and I was tired all the time, and my period pains well, they’re another story in themselves. The doctors have tried all different forms of contraception but none sit with me well at all. I honestly do not know what to do next...I could honestly honestly cry. I’m only 24 and obviously as a women you naturally worry about that area of your body. I was be so so so grateful for any form of advice. Thank you in advance. Beks. ☺️x

[Catness]

Hi Beks,

I’m sorry to hear you are suffering so much. I’m stage 4 endo with adenomyosis and interstitial cystitis and can empathise with a lot of what you’re saying. I think my first piece of advice is to ask your GP to refer you to a specialist endo Centre, go on this website and then see which one is nearest to you: bsge.org.uk/centre/

It is also important (if you don’t already know) if during the laparoscopy if they performed excision surgery or abalation. If they performed abalation (burning the endo off) it is the equivalent of picking the head off a weed but leaving the root in, therefore the endo can still grow and spread. Excision surgery is best as it gets to the root but unless you get every single bit of endo it can still grow (which is why I’m about to have my 6th laparoscopy ☹️)

The endo centres have a far better expertise and may be able to talk to you about treatment options that your current consultant is unable to provide/ doesn’t know about.

In my endo journey which started around 10 years ago (I’m 28) the best piece of advice I received was that the diagnosis and excision surgery is just the beginning, it requires a whole lifestyle change to manage it. This starts with diet which I found initially to be very scary and daunting and didn’t know how to start. I found Caroline Levitt’s Website (google endo resolved) which has some terrific information on. She had also published cookbooks for the endo diet. The endo diet is intense! I won’t lie, it’s a challenge at first. However I committed to it and it really made a difference to my pain levels and fatigue, it requires some planning and bulk cooking but it’s really worth considering.

I also changed over my sanitary wear to non-chemical and organic. In Sainsbury’s they sell a brand called Yoni and online I like the brand ‘&sisters’. Both of these conpanies sell period wear that’s kinder for you and the environment. I have noticed a massive difference in flow since I swapped over.

I’ve also started to receive monthly massages as I get a very painful back and I try to do yoga as much as possible. I also see a psychologist weekly as I find the mental health side of dealing with endo (as well as 4 other chronic illnesses) really tricky and need some help sometimes.

I know I probably sound like a hippy 😂 and if you’re anything like me you will just think that all these changes are not fair and too much to do. But I promise these changes will help you and if you change your care over to someone you feel confident in this will also help. Us endo sisters have been dealt a shi**y hand and there’s no getting away from it ☹️ But hopefully some of this advice is helpful xxxx

[Catness in reply to Catness]

Oh! Also before I forget follow ‘NewYorkEndometriosis’ on Instagram. I’m uk based but the Dr who runs that account is so knowledgeable especially when it comes to treatment options xxx

[Becky5267]

Catness, I honestly can’t thank you enough for taking the time to response to me with such detail. I will take the advice. I’m honestly just recently finding it so hard to manage and control! I think I also need to start changing my diet as reading through comments on this page diet seems to have really helped others! Thank you again I really do appreciate it! ☺️xx

[StefaniaJW]

Have you tried Visanne yet?

I don't know if your endo surgery was performed well or not, but let's assume it was.

There are so many other things you can do other than surgery and taking hormonal treatments.

You can get your vitamin D levels checked out. You can start an anti-inflammatory diet. You can start taking supplements that mght help you.

Have you ever had a vaginal swab done? Were you ever diagnosed with adeno other than just endo?

There are so many different type of situations to be going on in your case it's almost impossible to guess what's actually happening.

I suggest you only get surgery and support (hormone prescriptions, any test/scan) from an experienced endo excision surgeon. I cannot stress this enough.

[Becky5267 in reply to StefaniaJW]

Thank you so much for your advice! It really is appreciated.

[Becky5267 in reply to Becky5267]

Sorry can I ask what is visanne? No I haven’t tried this? X

[StefaniaJW in reply to Becky5267]

Visanne is a very effective progesterone-only pill that reduces endometriosis lesions/cysts. It is unavailable in the UK as far as I know but you can get a prescription and order it from other European countries.

[Seahorse48]

Hi, I'm so sorry you are so young and suffering a lot. Have you cut out wheat and alcohol? Both inflammed my symptoms. Another thing that helped me a bit has been progest e natural progesterone oil put on your tongue once daily. Camomile tea, with fresh ginger, raspberry leaf tea. Not tea bags loose tea. Geranium oil and camomile oil rubbed in your stomach. Geranium or epsom salt baths. Caster oil packs, hot water bottle or frozen peas.

Hope something I have said will help. And be gentle on yourself and sleep and rest as much as you can.

[Becky5267 in reply to Seahorse48]

Hello, thank you for replying. I don’t really eat much wheat and I don’t drink alcohol at all. Where did you get the progesterone oil from? I’m definitely wanting to try new things. Thank yu again for the advice ☺️

[Seahorse48 in reply to Becky5267]

Hi Becky, you are welcome 👍. I got the progest e oil from Amrita nutrition UK you can phone them up even order over the phone. It stores in the fridge lasts months and months. And it does help. Hope you get it and it helps you 🌹

[Becky5267 in reply to Seahorse48]

I’ll have to look into this!! Thank you so much💕

[GSUndiagnosed]

Hi Becky, i’m also 24 years old (ongoing endo diagnosis at the moment). I’m sorry to hear about your troubles. As the others have mentioned in the comments, i have heard a lot of positive stories about the effects of lifestyle changes i.e. diet, yoga, being active etc. I also suffer from tiredness and fatigue so i know it’s easier said than done x

[Becky5267 in reply to GSUndiagnosed]

Hello, have you tried anything that works for yourself? Thank you for your advice!! It means a lot!! X

[GSUndiagnosed in reply to Becky5267]

I’m trying to drink green tea every day and exercise 4/5 times a week to keep my energy levels up. Although suffering with fatigue is a new symptom so i haven’t found many ways to handme it yet.. I’m trying to research as much as possible, being on this site helps 😊What were your initial symptoms if you don’t mind me asking? x

[Becky5267 in reply to GSUndiagnosed]

Ah okay is green tea helping? I know exactly how you feel with the fatigue. Of course I don’t, Initially it started when I noticed my periods became more and more irregular and so so painful. Then I had really really noticeable lower stomach bloating. What about yourself? Xx

[GSUndiagnosed in reply to Becky5267]

It helps with digestion so it may help with your bloating, i’d try it is i were you x My symptoms started about a year ago, firstly with spotting blood after intercourse, then i started getting right-hand side pelvic pain more and more before/after periods and during ovulation. I also have had changes to bowel movements (sorry TMI!) and finally severe fatigue in the last couple of months.. I’ve had loads of tests and all have been clear.. I’m Getting an MRI scan done in April so hopefully will provide positive answers x