Not sure how to keep going

[livvi_livvi]

People keep calling me an inspiration and strong but Im really really struggling.

A little bit of background - over the past 2 years I spent 18 months on morphine, had an excision surgery and ended up having to have a TLHBSO and excision 12 months later in an attempt to help my pain. My pain for last 4 months has been amazing and I finally thought I had my life back. Then boom my pain is back.

I cant have prescription pain meds or anything like nerve pain drugs (gabapentin etc) so my options are Tens or wheat bag.

I just dont know how to keep going and push through the pain when its just getting worse and worse.

Any tips?

Xxx

[luthien]

Have you considered acupuncture? I haven't yet but I'm looking into it because some women have found it helps pain.

I currently have aromatherapy and massage with oils to ease flare ups; i was initially hesitant but it does seem to work and the massage definitely relaxes me. Is that something you maybe could consider? I think some massage therapy / aromatherapy centers can focus on pain specifically / abdomen problems. The one I go to is also a registered nurse which helps so much with understanding what I'm going through.

Just some ideas xx

[livvi_livvi in reply to luthien]

Ive tried accupuncture previously and instead of making it better it made it flare. 🙄

I havent tried massage or aromatherapy Ill look into that see if anyone near me does it. Thanks xx

[Violet159]

I'm so sorry for what you're going through, if you have basically ran out of medication options to ease your pain maybe ask your GP to refer you to pain management clinics? They might be able to give you lots of tips specific to your pain and some psychological help to keep you positive. I got counselling a while ago and it really helped me cope day to day.

You might also try getting one of those giant pregnancy full body pillows, I've got one and it makes it so much easier to sleep, keeps my posture good and I find it helps lower my level of pain overall - you can get them for like 20-30 pounds so they're not too pricey.

I really hope you feel better soon xxx

[livvi_livvi in reply to Violet159]

Thanks. Ive been through the local pain service which were quite frankly rubbish at best. But earlier in the year they referred me to another pain management service but Im still waiting to hear anything.

Thanks for the tip of the pillow ill have a look online. Xxx

[veneerofclass]

I’m sorry to hear that you’re struggling at the moment. It’s okay to have bad days with this and to feel upset and frustrated. My medication options are limited too, I’m on everything I can be and still get pain so I appreciate that this is really difficult for you.

I saw you’ve been through a pain clinic and going to another hopefully better one. I’m going through the pelvic pain clinic at the moment and they’ve had be do physiotherapy specially for pelvic pain. Not sure if that’s something you’ve done but if not might be worth asking for. Some of my pain is caused by my pelvic floor being weak from the years of pain, so strengthening it through my physio exercises has really helped. A lot of them are Pilates or yoga based so if you can’t get it through the pain clinic going to a physio-lead Pilates class might be helpful. If you’re in the uk, if you’re under the pain clinic you can get a discounted gym membership too, you just need to talk to your gp to go through the process.

I’m not sure if any of this might help but thought I’d put it out there as an option. I really hope that the pain starts to ease soon. X

[livvi_livvi in reply to veneerofclass]

Thanks. I used to do pilates but now the pain is bad again even the simplest exercises hurt more. Its just rubbish. Xx

[Alita88]

I'm sorry 😕 this is a shite disease no optimistic words from me. the only thing thats worked for me is the excision surgery and pill back to back. but I don't want to take the pill back to back until the rest of my menstrual years. Im really scared that it will come back like it does to virtually everyone I've spoken to. maybe yours it's just a flare, as the body takes time to acknowledge its new state (no reproductive organs) let's hope for that 🙏

[livvi_livvi in reply to Alita88]

Thanks. Its just so rubbish. Xx

[Hannah_w1990]

I had acupuncture and it definitely helped release some pain but also helped with my pcos as I had very irregular periods which were heavy and painful because of my endometriosis. I am wondering if physio might be an option to release muscle tension. My gyno mentioned it and I am on a waiting list for a pain clinic

[livvi_livvi in reply to Hannah_w1990]

Thanks for the suggestion I think Ill see if I can speak to my gp about physio. Xx

[Afrohair]

What’s tlhbso?

[Lindle in reply to Afrohair]

It is total laparoscopic hysterectomy, bilateral salpino oophorectomy. So to you and me removal of the uterus, cervix, tubes and ovaries. x

[livvi_livvi in reply to Afrohair]

Sorry yeah Lindle is correct. X

[StefaniaJW]

Have you ever tried dietary and lifestyle changes? Sleeping at least 9 hours per night, avoiding all sources of stress, following a diet rich in fish, veggies, fruit, nuts, free range eggs, wholegrains, water and herbal teas rather than refined carbs, processed and fried foods, cured meats, dairy and coffee are all very beneficial steps. It's also important to get plenty of sun by spending some time outside every single day (I go for a 20-minute walk every single day) + take vitamin D supplements during the winter (ask your GP about that).

Epsom salt baths, CBD oil and castor oil packs can help with the pain. For me, a Tui-na massage + cupping 2-3 days before my period made the most difference, it helped immensely with the pain.

If you take painkillers, they are more effective if taken before the pain appears (so a day before your period is meant to arrive for example).

[livvi_livvi in reply to StefaniaJW]

Hey, thanks for the tips. My pain is daily (obviously I have no periods as Im post hysterectomy) so I cant preload pain killers unfortunately. Sometimes so bad I cant move and can barely walk at the moment so cant exercise or walk.

Im struggling with my diet at the moment as Im struggling to eat anything. I probably do need to go back to cutting everything out.

Thanks for the tips.

Xxx

[StefaniaJW in reply to livvi_livvi]

No. NEVER cut anything out. Please focus on mixed smoothies, veggies that are easy to digest or bone broth they are rich in collagen, choline, vitamins, minerals, protein, fats and fibre, which is what you need the most with endo

A hysterectomy doesn't stop endometriosis unless full excision is performed during the hysterectomy.

I suggest you look into another opinion ASAP

[livvi_livvi in reply to StefaniaJW]

I know a hysterectomy doesnt cure it. And I had full excision completed at the same time by an endo specialist.

I cant drink smoothies. 🤦‍♀️

Thanks for the suggestions though.

Xx

[StefaniaJW in reply to livvi_livvi]

Your situation is very severe and I suggest you find a way to be admitted to a hospital because you cannot stop eating everything and being unable to walk, especially given you have received complete excision. What has your last consultant or GP have to say about your situation?

[livvi_livvi in reply to StefaniaJW]

Yeah my pain and situation are severe. I dont currently want to be admitted to hospital though as I dont like it in there. Last time I was this bad I ended up being admitted for nearly 2 weeks and then discharged in no better state.

Im going to go back to my GPs next week to discuss it all as they said to give it a few weeks to see if it settles. Ive not contacted my consultant yet but Ill see what my GP thinks.

X

[StefaniaJW in reply to livvi_livvi]

Always remember GPs are not trained to advise thoroughly on the matter. It's always better to go straight to the endo specialist, especially if it's severe.

I genuinely hope your endo specialist is a good one but it's not normal to be in that much pain after full excision

Have you ever had your vitamin D tested? What are your diet and lifestyle like? Do you avoid smoke, alcohol? What else do you avoid? Do you sleep enough?

[Lindle in reply to StefaniaJW]

Oh please stop grilling livvi_livvi . I'm sure she is a grown up and knows what adjustments she can and cannot make but it's not always easy.

[Lindle in reply to livvi_livvi]

Do you know what stage/where your endo was when you had excision and was it in an endo centre as this is likely to be most relevant?

[livvi_livvi in reply to Lindle]

It was completed by a bsge surgeon with alot of experience and completed in an endo centre. It was stage 2/3 it was attaching my ovary to my pelvic wall, all over my uterosacral ligaments and in a few other spots too.

The problem is that by my consultants words my case is extreme and my body is an anomaly in regards to how it reacts to treatments etc. I feel a bit stronger again today and ready to keep fighting.

Xxx

[Lindle in reply to StefaniaJW]

Although many women do find dietary changes help there is very little definitive evidence on what foods might be beneficial and which harmful. It seems clear that alcohol might be best avoided due to its affect on increasing oestrogen levels and gluten due to its inflammatory effect (neither of which you have mentioned) but many foods might be included in your list that are high histamine - bananas, tomatoes, citrus fruits, nuts, (especially walnuts, cashew, peanuts), shellfish and many others besides. Great care should be taken in giving this sort of advice.