Hi Everyone this is my first post and any advice would be greatly appreciated. After 18 years of going back and forth between GP, family planning and gynae I've been told that they've ruled everything else out except endometriosis so that's what they'll treat me for. My consultant doesn't recommend a diagnostic laparoscopy and diagnoses based on symptoms. Has anyone else experienced this?
Also, what treatments have people had? He said the only treatments available to me are contraceptives (pill, mirena, injection) but I've already tried all these and they haven't made a difference...things have actually been worse since I've had the mirena.
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sarah761
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Seriously though, it really depends what symptoms you have and how bad your pain is. Surgery is needed to confirm diagnosis and can also help to reduce pain if the endometriosis is treated at the same time, but this very much depends on how severe your disease is and also where it is. It can range from something minor to drastic surgery like hysterectomy and bowel resection. There is an argument that the risks of surgery outweigh the benefits if you only have mild symptoms, but if your pain is bad and your disease is severe then it should be offered.
There are drug treatments available to us other than contraceptives and your consultant should know this, but again it depends on the severity of your disease.
I have had 3 surgeries - initially a diagnostic surgery to look for the disease, and then two further surgeries to treat it, ending with a total hysterectomy, removal of fallopian tubes and ovaries, and excision of all endometriosis tissue.
Drug treatment wise I had a mirena, norethisterone, cerazette, decapeptyl and prostap and then I also had an assortment of pain relief meds - mefenamic acid, codeine, diclofenac, tramadol, oramorph, tranexamic acid etc.
Thank you for replying. To be honest I have put a complaint in and I'm waiting to be transferred to a different consultant as my appointment was just awful.
My symptoms are worse now than ever, I'm in pain most days. I have spotting/bleeding more often than not. It's at the point where it's affecting my marriage, my job and my ability to parent my children. The only pain relief I have prescribed is mefenamic acid which helps a little.
My sister has stage 4 and has been told that she can't have a hysterectomy as there are so many adhesions it would be too dangerous. I'm worried I'll end up in the same position if things are left much longer.
These are specialist endo centres, mostly NHS, set up to deal with severe disease. If general gynae are telling her there is nothing they can do it might be worth asking the GP to refer her on to a specialist centre.
Your GP should be able to help you with pain relief.
No, we didn't realise there were specialist centres. I'll pass the info on thank you. At the moment she just take the pill continuously so she doesn't get periods which she has found to be the best thing she has tried
Hi I was diagnosed last year with Endo. I have been on the Pill for years after been diagnosed with PCOS when I was 16. I had a Lap to confirm diagnosis. In all honesty I was in absolute agony for weeks after the surgery. The gas used to inflate your abdomen goes into your muscles which is it's way of getting expelled from your body. The pain of this was awfuk, especially in my shoulders, ribs and chest. Additionally, I was naturally sore for a while due to the lap. It did solve my problem for a while but not near long enough. I always took the Pill back to back for 3 months. Since the lap my periods are so much worse, the pain is agonising to the point I can hardly move. Therefore, I have had my first course of Prostap injections today, where I am anticipating being on it for around 4 months.
In all honesty I wish I never went ahead with the Lap as I have had nothing but problems since. But that's just my experience, everyone is diffrrent. Hopefully things will be better once this Prostap gets into my system. I do want children in the future but it is difficult under the circumstances. I wish you well with your treatments. X
Thank you for sharing your experience. I guess there's a lot of pros and cons to weigh up so it's good to hear from people who have been through this already. I hope the injections work for you X
If your sister has it there is a good chance that you do to, it can run in families, it took till I was 32 to be diagnosed and my 14yr old niece got diagnosed last year, the lap is worth it if you get the right doctor, don't wait for the complaint just go see your GP and ask to be referred, look on the link the other lady posted and look for your nearest one to give to your GO, good luck
Excision surgery for endometriosis (by a lap) is the gold standard for endometriosis and by far has best success rates. A lot of surgeons will just ablate (burn) which is problematic because you can't tell how deep the disease goes and if you've removed it all (if the spot isn't fully removed it grows back, if it is fully removed then it's gone).
Hormonal treatments can help symptoms but don't actually treat the disease.
You definitely need to get yourself to a new consultant. As mentioned above, there are specialist BSGE centres all around the UK. I'd also recommend joining a group on FB called Nancy's Nook which will help you get to grips with the science and facts on endo as so many doctors and specialists will tell you really out-dated and frankly wrong information.
Basically if your consultant is saying they can't remove it, it means they aren't skilled enough to remove it.
Might be a good idea for your sister too. I was absolutely full of adhesions ( surgeon said I was at the severe end of severe endo) and all were removed as was the majority of my endo. There are a few spots he left that would require bowel resection and a thoracic surgeon to remove so we're saving those for a later. Hysterectomy, however, isn't generally a good treatment for endo as it only removes what's on the uterus and generally isn't actually needed. There are other conditions like adenomyosis, which some women also have, that does make it a good treatment though, I'm obviously not sure of your sister's full circumstances.
I had excision at a top BSGE centre and my pain returned worse than ever a month after surgery. There is no cure for endo. Excision, hysterectomy, pill ect ect. They are effective treatments. Some people are lucky and go back into remission, others aint. The aim is to treat pain/infertility and its not always that simple! Surgery has risks. Its about weighing pros and cons. You can be diagnosed without a lap and you can be treated for endo. Surgery is actually only advocated for very severe endo. Ie those whos bladder and bowel are effected who are incontinent! Or are infertile.
But for clarification for the OP, there is a reason I said "best success rates" and not cure. I also feel uncomfortable calling it cure. Although the more skilled your surgeon the better those rates are, as endo appears in a variety of forms and can easily be missed. There's only a handful in the UK that the Nook deem to be skilled enough and their success rates a very high but still not 100% (although no cure has 100% success rates if we are going to get technical!)
There's also always the risk of new adhesions forming during the healing process, which can keep causing problems.
There are also secondary issues like pelvic floor dysfunction that can continue pain and are often missed, endo can cause the muscles to tighten and build up and they don't let go without help from specialist physios.
Thank you both for replying. I understand everyone's circumstances are different and this is a good starting point for me to research my options so hopefully when I attend my next appointment I'll be a bit more prepared.
I had a diagnosis like that for 15 years they just treated me as if i had it and had about 2 or 3 treatments of zoladex over the years, hysterscopy + coil + endometrial lining biopsy last year but finally due to still chronic pain they finally agreed to laparoscopy which i had two weeks ago ans supposedly i dont have endo but they didn't bother looking for anything else either. This was a local gyne consultant not a endometriosis specialist. Im going to see my gp for the next step in my battle for answers.
I think this is a worry of mine if I don't have the lap done they may be treating me for something without definitely knowing if I have it. I hope you get some answers too!
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