Does it ever get any easier?

[Rachiiee]

Hi guys,

So I’ve posted on here before in regards to pain, treatment and generally feeling quite down in relation to this whole endometriosis saga!

I won’t get into the back story but I’ll give a little oversight in relation to recent events. I was based in London and ended up having the most amazing gynaecologist who I felt fully understood me and didn’t constantly give my only option as a hysterectomy.

The problem is I’ve recently relocated back up north and registered with a GP now I can’t fault my doctor or the surgery however I feel like the gynaecologist she referred me to isn’t very clued up with endometriosis.

I have a coil fitted under GA due to previous perforation. I went to see the specialist who suggested removing the coil and starting Zoladex again with the addition of HRT. This was all well and good however I’ve seen first hand the effects of going through this at a young age (my mum had a hysterectomy at 34 due to cancer) and now have incredibly bad osteoporosis.

I expressed my concerns to gynae in regards to HRT and Zoladex and I feel like he didn’t really take me on just said the risks are considerably less worn HRT but there is still some and when I asked to elaborated he kind of dismissed me. I also expressed my concerns at having my coil removed whilst being awake due to the excruciating pain that I am in even when they try to examine me and he genuinely let out a sarcastic laugh. I spoke with my GP who advised I got them to discharge me and she would refer me to a specialist within the endometriosis field. Now this is when my problem begin. The hospital has told me several time on the phone I am discharged however have as of yet (it’s been 2 months) sent a letter to my GP in order for her to refer me to somebody else.

In the mean time of this I have been bleeding for 5 out of the past 6 weeks and it’s very very heavy bleeding. I am at my wits end due to the bloating that is making me look 9 months pregnant and the pain has me contemplating ringing for an ambulance (I wouldn’t but sometimes I just feel so useless, fed up and scared that I panic.

So the reason for this post is to ask what does everyone do to deal with the pain? I am on strong pain relief however at times I feel like it doesn’t even touch the pain. How do you stay positive? Just any little advice to help a girl out who really is feeling incredibly down about this whole situation. I am usually quite a bubbly happy go lucky person but recently I feel like it’s all becoming too much to deal with.

[kittykins7]

Hi Raichiiee

I really feel for you. And without sounding like a broken record, I’m going to give you the best and same advice that I have given others who have sounded at their wits end.

Read the book by Wendy Laidlaw called ‘heal endometriosis naturally without painkillers, drugs or surgery’ If you really are committed to doing a lot of the things she suggests .....wow it is a miracle, and has truly saved me from a living nightmare with my stage 4 endo that had returned after surgery. Life saver.

You can get this on amazon. Don’t forget to let me know how you get on. Good luck xxx

[Rachiiee in reply to kittykins7]

Thank you for replying I definitely will have a look into this. At this point I’m hoping something will make it easier. I also have stage 4 that’s returned every time after 3 surgeries X

[Meriel_Owen]

So sorry you are going through this. The healthcare system can be so bad sometimes. Are you able to try going private? Or can you ring up your previous gyne and ask if they can recommend someone up north? I've been treated by a great surgeon called Ruth Smith at Burnley - it's a BSGE too. I ask to be referred there, wasn't going to take no for an answer. It can take a while to get referred though, and then you are on the waiting list again. It's good to keep badgering people and asking what's going on - it's not usually anyone's fault just too much work and too little staff, with poor communication.

I would also try out natural remedies - aromatherapy, diet, exercise, - to deal with the pain. It can seem like a mountain, but taking small steps can really help reduce the inflammation and lift your mood. I think stress is a big factor in my amounts of bleeding/pain.

Wishing you relief and healing.

[Rachiiee in reply to Meriel_Owen]

Burnley isn’t too far away from me. I have a good diet (with occasional treats) and go to the gym 4/5 times a week so I’ve tried that but I do fine afterwards the pain returns worse than before I went so I’m found to keep sticking with it and try a book that was recommended above. I’ve never tried aromatherapy have you? Have you got anymore information on it? Thank you for replying X

[Meriel_Owen in reply to Rachiiee]

yes my physio uses aromatherapy. It's great because she knows which oils have certain properties, so which ones are good for inflammation and pain in the pelvic region. There are plenty of books and info online on it I'm sure. I always feel so relaxed afterwards.

Wow sounds like you are really doing your best. I don't know you so I can't make a judgment, but to me, that sounds like you are going to the gym quite a lot, maybe even too much at the moment? Remember that rest is when your body heals, and internal healing can take up to 12 weeks.

Can you ring your GP and ask to be referred to Ruth Smith at Burnley? She's great, and if you need an operation they will excise it properly.

Take care x

[StefaniaJW]

[Post edited in line with Endometriosis UK's code of conduct]

YOU NEED AN EXPERIENCED ENDOMETRIOSIS EXCISION SURGEON IN YOUR AREA ASAP. . Zoladex, the coil... they will help temporarily but definitely not in the long run. You need help for the long run, you need an expert by your side.

In the meantime, start taking supplements and changing your diet and lifestyle significantly will help immensely

[Rachiiee in reply to StefaniaJW]

thank you for replying, I do have quite a healthy lifestyle in terms of the gym and eating. What supplements would you recommend? I have noticed all of the ‘treatments’ are short term fixes and I am desperately searching for a long term fix which doesn’t involve a hysterectomy at the minute. Many thanks for replying X

[StefaniaJW in reply to Rachiiee]

[This post has been edited in line with Endometriosis UK code of conduct)

1) You ABSOLUTELY need excision surgery.

2) The gym is not necessarily good physical activity. You need non-strenous physical activity, preferably outdoors. If you do training in a gym, make sure it's balanced, non-strenous and find time to do some physical activity outsite.

3) Have you ever been to a nutritionist? Do you consume at least 3 servings of veggies per day (cooked, raw and fermented)? Do you eat dairy? Do you drink coffee? Do you avoid soy, refined carbs, all desserts and fried foods? Do you only eat freshly caught fish, grass-fed meat and free-range eggs or do you for for the industrial types too? Eating healthily is extremely complicated and requires a full lifestyle change.

4) Supplements vary. To almost all endo sisters these are advised: magnesium, vitamin B2, vitamin B6, folate, zinc, selenium. Vitamin D, vitamin B12 and iron is often lacking but a blood test should confirm it. Powerful antioxidants such as curcumin, astaxanthin, pycnogenol, N-acetylcisteine, alpha-lipoic acid, various flavonoids are also very beneficial. CoQ10, glutathione, Vitamin E, vitamin A and vitamin C are also good antioxidants. Choose a supplements that contains several of these antioxidants but pay attention to vitamin E and A which accumulate in the body.

[AllthatGlitters]

Hi I totally sympathise with you as I am in the same boat as you, the pain is incredibly hard to deal with as well as everything else that goes on with having gynaecology problems. I think we are expected to carry on and live a “normal” life however my life personally has changed me as a person due to this illness. Definitely get a BSGE consultant and hopefully get taken seriously.

As I get older my pain is worse, everyone has their own opinions on what they think you should do (many tell me hysterectomy) however it’s me that would have to go through it, not them.

Apart from here there really is very little support, I don’t know where you live if you have access to support groups?

I would say if your pain gets that bad to go to A&E as they won’t turn you away (from experience), do you have strong painkillers at home?

X

[Rachiiee in reply to AllthatGlitters]

Thank you for replying. I think that’s the issue that people expect you to carry on (& we do) but it’s exhausting and a struggle. My previous consultant was amazing and incredibly helpful and understanding with a long list of experience with endometriosis so I think that what makes it more difficult seeing a consultant that isn’t as understanding. Yes I have quite a variety of strong painkillers that I take but it seems at the moment I am taken them more often than not and that’s what concerns me as I feel I can’t be doing this forever X

[AllthatGlitters in reply to Rachiiee]

Hi yes I know and I have found that tablets like codeine use to help with the pain and now they no longer do although I take them on occasions as I leave it until my pain is really bad. I wonder if after a while the body doesn’t respond well to them? x

[Rachiiee]

Hi thank you for replying! I have had excision surgery 3 times but they may be missing something. Thank you for your advice I will look into it X