Sharp and stabbing pains are really common in women with endometriosis. If you are woken at night with pain when it is not your period, it is often sharp or stabbing pains that are the problem. Unfortunately, these pains don't usually get better with surgery. They are due to a change in the way that the nerves from the pelvis send pain impulses to your brain.
The problem is certainly NOT 'all in your head'. It is 'all in the nerves'. Doctors call this 'neuropathic pain'. It is also common in people with a bad back, sciatica, and diabetes. You have probably already realised that most normal pain killers don't help this type of pain.
The good news is that it can be managed successfully with a combination of:
- medications (amitriptyline, pregabalin, gabapentin or valproate)
- exercise (start slowly or you will get worse to start with)
- regular sleep (will be easier once you are on a medication)
- moving on from, or resolving stress in your life
Stress did not cause the problem but it can aggravate it.
While the pain is severe, it does not mean that you have cancer and is not a dangerous pain.
If you have our book on pelvic pain, it is covered in more detail on pages 58-67. The medications that help this pain are covered on pages 180-182. Your local doctor will be able to prescribe these for you.
Sharp or stabbing pains often mean pain from the nerve pathways in the pelvis. There may be nothing to see at a laparoscopy, but lots of pain. Usually the pain comes on at any time, but can be worse with periods. This type of pain often wakes women at night. It often doesn't get better with surgery.
ReplyDeleteIt can be treated with a mix of special medications like amitriptyline, gapapentin, pregabalin, sodium valproate, and with lifestyle changes such as regular gentle exercise, moving on from stress and regular sleep. The lifestyle changes are worthwhile, but its usual to need medications too.
Congratulations on setting up a useful and practical advice blog for women with endometriosis!!!
ReplyDeleteDear Tricia,
ReplyDeleteIts a pleasure and thanks for your comment. So many women have sharp or stabbing pains and most say that it is when these pains started that they really started to become worn down by it all. There is so much more that can be done. Surgery has an important role in endometriosis but there are many pains you can't see at a laparoscopy. This is one of them.
Hi Susan,
ReplyDeleteI came across your website/blog via Tricia Ong. It's good to have more resources and discussions online. I had a laparoscpy 4 months ago but the painful periods continue with even worse symptoms. I have stabbing pain combined with dull regular pain, abdominal bloating and etc etc. Many books on endo suggest a "reduction in stress". Why is that? What is the correlation of stress, pain and endo? I've been thinking about quitting my job, as I feel very fatiqued, but am having problems convincing my partner. Thanks for any comments on this! Rita.
Dear Rita, Thanks so much for writing. I am sorry to hear that you have had such a difficult time. Without knowing your situation well, I do have a few comments:
ReplyDelete1. If all your endometriosis was removed (cut out)at your laparoscopy and you still have period pain, then the period pain may be coming from your uterus. There are many different treatments for pain from the uterus.
2. Sharp or stabbing pains mean that the nerves in the pelvis have become sensitised. They are sending pain signals even when nothing is happening. Women with this are often woken at night with sharp pains, and feel really worn down by the pain. This pain is called neuropathic pain. Its a pain you can't see at a laparoscopy. Surgery doesn't help, but special medications to make the nerves behave better certainly do. Neuropathic pain can also cause bloating, headaches and tender points in the muscles around your shoulders.
3. Stress makes everything worse, but I don't believe it caused your pain.So,unless you have a really difficult job or work very long hours, stopping work probably won't help much. I would certainly try a medication for neuropathic pain before stopping work.
Rita, you have a complicated pain picture, but you are the type of person we have written our book for. There is information on all the treatment options for your problems. Your GP can help you with most of these options. The book is available online at our website www.drsusanevans.com, but you may be able to get it from your library. The ISBN is 978-0-64651358-4 and it is certainly available from libraries in South Australia.
Best wishes, Susan Evans
HI Susan
ReplyDeleteThis is fantastic having somewhere to ask questions of people that understand what we're going through, and can offer practical advice without making us feel like we're constantly whinging:) Ive also bought your's and Deb's book on Pelvic Pain, its been a great guide for someone newly diagnosed like myself.
I wondered if you could provide any extra advice on treatment and options for Adenomyosis? Ive suffered a coupld of miscarriages, before being told I had Endo, but now they suspect Adeno. as well. Im 34 and although Dimitriose has helped with the level of pain, Im not looking forward to going off them in a couple of months and back to the daily pain and no sex-life due to the agony. Is hysterectomy my last resort? Does a Mirena help my condition at all?
Dear Amanda,
ReplyDeleteI am so glad you like the book and thanks for contacting me. I'm sorry to hear about your miscarriages. It must be very distressing for you.
Before commenting on your pain, could I ask:
1. Whether you have had any surgery for your endometriosis, what they did and where the endometriosis was, if you know?
2. Whether you have period pain when off the dimetriose, but are otherwise well, or whether you have a mix of different pain problems? Bladder pain? painful sex? sharp stabbing pains? Bowel pains?
3. Whether you became pregnant quickly or it took awhile?
Look forward to hearing from you,
Regards,
Susan Evans
Hello
ReplyDeleteYes, Ive had one Laporoscopy in May this year for Endo which was mostly round my bowel, which was twisted and stuck with Endo. It initially didnt seem like there was a lot to remove, but my pain increased post-surgery and sex was impossible from the pain during and for days afterwards. Bladder and bowel pain are mostly daily occurences, as is the stabbing pain. Pain around periods was about the same as before surgery, so I was put on to Dimetriose, which has improved my symptoms but not removed them completely. Plus the side-effects are a new challenge:)
It took about 6 months for me to get pregnant the first time, then after I lost that pregnancy it took another 3 or 4 months, so I guess not long compared to some women.
Im just figuring that if I stop the medication, the sex will be too painful to even attempt regular intercourse to get pregnant, and goodness knows how long it may take anyway. Feelign a bit dis-heartened to be honest, and I just want to be able to enjoy life pain-free.
Even this Saturday night, my partner had a work function and I was on painkillers all day with a bloated stomach to be able to even go. Im sick of not being able to plan going out without wondering if I'll be up to it. God this disease sucks sometimes!!
Dear Amanda,
ReplyDeleteThanks for explaining more about your situation. I am not surprised that you are feeling worn down and it is a difficult choice when you want to become pregnant but are anxious about going off your medication.
Like many women, you have a mix of different pains and I am not sure I can address all of them in a blog. Still there is a lot more that can be done, and I am sure that there is a lot more that can be done. If you have access to our book, all these problems are covered in detail so I have written down some ideas.
1. Regarding the bloating, this is often helped by dietary changes (page 46), or a low dose of amitriptyline (page 180)
2. Regarding the period pain, you can still use a diclofenac rectal suppository on the worst days when you are trying to become pregnant as if you have a period, you are not pregnant. They last 12 hours and are much more effective than normal period pain medications. (page 35 and 169). You can still use pain tablets 171.
3. Page 148 describes the best time of month to get pregnant so hopefully it happens more quickly
4. Painful sex can be due to a few things all combined rather than just endo in your pelvis. This is why the dimetriose has not helped all of the pain. It is due to a mix of things. Page 76 explains how you can work out which particular causes of pain affect you and how to treat them. Often it can be painful muscles in the pelvis, a painful bladder or sensitised nerves in the pelvis. Often it is all these things together!
5. Chapters 11, 12 and 13 are written by Deb Bush and just great for women who are just finding it all too hard. I am sure that you would find them useful.
If you are looking for something to help right now, just to make you feel more comfortable and more in control of your life, then I suggest you try amitriptyline 10mg early evening, every evening. It helps headaches too if you have these. Your local doctor can prescribe this and if they are unsure at all, take our book to them and they will understand.
They can make you a bit sleepy in the mornings to start with, but it usually settles down after a few days.
With best wishes to you and your husband,
Susan
vvv
ReplyDeleteFor me it is not surprising that women with these problems feel worn out and miserable life.
ReplyDeleteI am 26 years old & i have severe endometriosis. ive been through alot to finally have figured it out...late night trips to the er...stabbing pains...thinking i was having an ectopic pregnancy...cysts bursting...appendix bursting...it ended up being the endometriosis...it truly messes with your hormones...i am finally going to have my first laproscopy done in sept...ive been ttc for 3 years now...ive had 1 mc 1 yr ago...im hoping that with the laproscopy & clomid i will be able to get pregnant...i am very hopeful :D I just wanted to write on here to support other women who suffer from this...I have sometimes felt broken...but i know god has a purpose & plan for my life...so pleasae be encouraged that your not alone.
ReplyDeleteDear Anonymous, Good luck with your laparoscopy. It sounds like you have had lots of different pains for a long time. If you can, I would suggest:
ReplyDelete1. Asking your doctor if you can have photos, or a copy of your operation sheet for your records, so you know where your endometriosis was and how the rest of your pelvis looked. Keep these for always.
2. Remembering that the amount of endometriosis they find, doesn't correlate with the amount of pain you have. Some women have lots of endometriosis and very little pain. Others have lots of pain and not much endometriosis.
3. Realising that there are many pains you can't see at a laparoscopy. Your operation is a great first step, but there is much more to pelvic pain than the endometriosis lesions in the pelvis. You might need to use a mix of different treatments to be really well.
Very best wishes,
Susan Evans
Thank you so much for starting this blog. It is nice that endometriosis is finally starting to make a blip on the map. Hopefully, with people like you starting blogs, women will realize they are not alone with this condition and we can all raise awareness and start finding more answers about the condition. It is hard to have a condition that can leave you in constant pain but you look normal so people don't understand. For so long I thought I must be exaggerating what I felt or that the last painful episode I had really wasn't that bad. After hearing other women speak I know that I am sane and I really do have something that is affecting my life, not my mind. Thank you, thank you and good luck to everyone on here.
ReplyDeleteDear Piper Mick,
ReplyDeleteThanks for your contact. We have been a bit lax on the blog lately, but hope to revitalise it this year. There are lots of exciting things happening in pelvic pain and hopefully soon, some things really improve.
*Long, I'm sorry* I am a 26 year old female. I have had Tubal clips put in nov 08 and a uterine ablation feb 09 (because of excessive bleeding). No periods since. I started having stabbing around oct 09, and have been fighting them since. I had a vaginal ultrasound oct 10, but was told that my right ovary was enlarged but no treatment on it. The pains got worse, and ended up almost every day. Dec 11, I went to a different Doc, and did another vaginal ultrasound where they found that my Uterus was in a shape of a heart and that I was retaining fluid in my Uterus. Jan 12 I had a D&C and a laposcopy to "look around". What they found during surgery: Uterus was closed due to scar tissue, my tubal clip broke through the tube and I was having regular meses (but was bleeding out into my stomach cavity which explains the pregnant looking stomach), and endometriosis. The did the D&C to clear out fluid, tied & burned the tubes with double clips and burned off the cists. As they were closing me up, my uterus started hemorrhaging. The surgery pain went away after 3 weeks. Now 6 weeks later, I am having the stabbing pain in my right ovary area, only a few have knocked me off my feet. The doctor said that when the pain comes back, she will put me on birth control. I have not had a period yet. Does this mean that my endo is back, and I will have to start the hormone treatments?
ReplyDeleteDear Anonymous, Really sorry it has taken this long to answer your questions.
DeleteIt sounds complicated, but you have explained it really well.
Sounds like you can be reassured about the endometriosis. They would have seen it at the laparoscopy in January, so I don't think that is the problem.
Whenever I see women with a stabbing pain on one side, I always think of pelvic muscle pain. It doesn't show on a laparoscopy or scan so it can be really frustrating.
There is a muscle on the inside of the pelvis called Obturator Internus. When this muscle cramps, there is a really severe sudden pain on one side that makes you want to bend forward, lasts awhile, is better with a heat pack, and has an ache afterwards. Sometimes the pain goes down the thigh or sometimes even down into the foot.
Women often call it their 'ovary pain' because thats where they feel the pain, when really the ovary is fine.
If you have this type of pain, there is often pain with sex as well, or pain that is worse with some exercise, especially any 'core-strength' exercises such as pilates.
The best treatment is:
- avoiding things that make it worse, but keeping moving with regular gentle exercise like walking
- a pelvic physiotherapist who knows how to treat tight pelvic muscles. Sorry, but they can be hard to find....If you go to one that causes you lots of pain, then its good to look elsewhere
- a small dose of amitriptyline often helps, like maybe 5-25mg taken 2-3 hours before bed
- the pelvic muscle relaxation CD available on our website
- the stretches on the website on the relaxation CD page
- or Botox.... yes, really.
Botox helps wrinkles by relaxing the muscles of the face. It helps pelvic pain by relaxing the muscles in the pelvis. Unfortunately it needs to be done as day surgery (no cuts or stitches but it would be painful if you were awake), takes 2 weeks to work and lasts 4-6 months.
Back to your note..... you can certainly try the birth control pill, but if it doesn't help, think pelvic muscle spasm.
Best wishes,
Susan