Recently I have become frustrated as to how familiar the pain of endometriosis has become to me. When I became sick nearly five years, I remember feeling something strange in my body, a sort of ache that I noticed was there every day. The nature of the pain made me initially think it would just ease and disappear but as the weeks passed, the pain was actually becoming stronger and I realised that it was a daily pain that I could not ignore.
Many operations and heartbreaking attempts at treating the pain have occurred in the past few years but unfortunately I am still plagued with that pain and although it may only come once or twice on the good days, it is still there. I feel it and I know it is very real. I know when I am not in pain and I know when I am in pain. However I no longer feel surprised anymore when that pain comes.
I wonder is this wrong? Or is the best way of coping and getting on with my life?
Awnie, i know what you mean totally. I became sick with Endo about 8 years ago, i had terrible periods all my life but after coming off the pill to to try and concieve thats when the real pain started! Lap revealed stage 4 with no chance of having a baby, endo everywhere tubes and bowel!
I am in pain daily, and for some reason i now kinda accept that, it seems normal now to have back pain, leg pain, swollen tummy, and general pain! it doesnt stop me working, i just take painkillers when i really need to, the rest of the time i just get on with it.
I dont really know if its wrong to accept it but its became life i suppose, i know its hard as others just dont get what its like unless they have endo therefore when i say im tired or i cant go out, i get some strange looks!
I think we just get on with our lives and cope the best we can, until they find a real cure for this horrible silent disease!
Ladies, you need to ask your gp to refer you to see an endo specialist surgeon for stage 4. There is help out there but you need to see the right person. There is a multitude of medical advice out there.
Lots of ladies get inadequate treatment because they see a person with a mis-match of experience according to the level/ stage of endo that they have.
A person with stage 4 endo seeing a gynea will often get offered:
1. menopause inducing drug treatment. This is effective for shrinking endo prior to surgery but is not a long-term solution but a temporary one, if you can tolerate the side effects of chemical menopause;
2. laser treatment (which burns patches of endo off the surface rather than removing at a deeper level, it causes scar tissue as it is a burn, and endo sometimes springs up again elsewhere from that deeper layer);
4. Many surgeons say they do excision surgery but it is generaly 'patch' excision (which admittedly is better than laser) but if you have endo stage 4 widespread, likelihood is you will still have endo after patch excusion and, whilst you will hopefully gain some improvement in symptoms post-op, as endo will likely still be present, ladies will go back again fin the future for further 'patches' to be removed;
5. hysterectomy and oophrectomy. Hysterectomy is advantageous if you have endo in the uterine muscle, or have fibroids or other reason to have a hysterectomy. If you have stage 4 endo widespread and do not have it removed also from elsewhere, then you will still have endo. Removal of ovaries to get rid of the hormones is becoming outdated thinking as your body does still produce hormones after menopause that your body needs (hence HRT). Far better to remove the endo!
3. pain management therapy (useful alongside appropriate treatment as any reduction in pain is to be welcomed, but doesn't tackle the root of the problem unless with other treatment). I have seen it as a fob off for ladies where there is an inexperienced consultant who says nothing further can be done;
Much of the above, whilst better than no treatment, is inadequate for stage 4 endo, although some of it may give temporary relief.
Likewise if you only have first stage tiny patch of endo it would be equally inappropriate to undergo a long op sch as 'total peritonium radical excision' which is the rolls royce of endo surgery and the best treatment for stage 4 widespread endo.
Unfortunately because of the time, skill and dedication this surgery takes, not many surgeons can do it. This removes the whole top layer of the peritoneum so all endo seen and unseen is removed. The organs that have become misshapen out of place can go back as far as possible to where they should be and the peritoneum heals leaving you with a brand new one minus endo.
I underwent this 2 years ago and have so far been pain free and back to normal. This was after my first gynae consultant told me my only hope was a hysterectomy and oophrectomy.
I learnt that you get offered the treatment that is commensurate with the experience of the consultant you see and there is a wide variety of experience amongst those who say they treat endo. You need to make sure you are seeing a person who is experienced to deal with the degree of endo that you have.
I went through the mill re treatment option so i hope this will help in some way.
Just to say though - sometimes grade 4 endo beats even the 'Rolls Royce' surgeons.
My frankly fantastic NHS gynae who doesn't specialise personally in endo went out of her way to consult others who do and has been amazing since I was turned down for that Rolls Royce treatment on the basis that my endo was too complicated even for God himself.
It's not fair to assume that just because our hard pressed NHS doesn't have the best resources to hand that it doesn't care. In my experience, they do their very best to treat a disease that has even the so called experts baffled. It is true that great advances are being made in treating it, but there is no cure for this disease, only luck in how people respond to the treatment they receive.
Stage 4 for the best part of 20 years and counting, and thanking God every day for my gynae
Hi. Unfortunately, I did seek the opinion of an endometriosis specialist a few years back who primarily performed excisional surgery. This doctor could not help me and categorically stated that I did not have endometriosis, something that I could not accept, especially as I have had endo removed and seen since.
Luck has not been on my side when dealing with so called specialists but I am learning to cope with the pain in my own way.
I think that if it works for you, there isn't a 'right' or 'wrong' way of coping with endometriosis.
In this day and age, so many people expect answers to everything immediately, and want to blame everybody else or at least transfer responsibility for things they can't control.
But this is endometriosis. The medical world doesn't fully understand it yet, there is no cure, and so their hands are tied too.
It's not fair that ladies with endometriosis have to live the life they do, but at the same time, it's nobody's fault, so lashing out constantly is wasted energy. That's not to say that the odd rant at the skies isn't helpful, we wouldn't be human if we didn't! but it makes more sense overall to find ways of dealing with what we've got. And by that I don't mean just accepting it and not trying to do anything about it, but it sounds as if you've done as much as you can to this point.
It's rubbish that our lives are lived around endo but once you know your own endo, you'll know how best to deal with it.
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