I'm week 9 post lap op that diagnosed and removed a lot of endo. I am also in week 8 of taking Visanne (whether that is relevant or not to what has been happening to my body, I have no idea).
Some endo symptoms and pain have improved and/or disappeared since op which is great. But some pains have remained and I have also been experiencing new pains and symptoms that I have never had before.
I have a list of symptoms that have been going on since my op, the most painful one being nerve pain. But the newest pains in the last few weeks have baffled me and also concerned me a bit. I have been having nightly episodes of hot, sore/achy and feeling of swelling in my legs. Sometimes this also continues until the morning after I managed to get some sleep. I have also been experiencing sore tender ribs (mostly left side) and sore left breast/chest with the odd sharp pain in breasts (similar to hormonal breast pain) for the past 5 days maybe.
The breast pain comes and goes. The rib/side pain has become more annoying to say the least and I think when the side pain throbs I get some shortness of breath. I also have a increase in sore muscles nearly everywhere in my body and a random dry cough at night for a little over a month.
Now I don't want to over think or Google things. The only thing i can think of to cause these symptoms,and what other people think it is, could be recovering pains, hormonal, nerve pain, and/or side effects from Visanne.
I haven't really been taking pain killers because they don't work but I have recently started trying celebrex on the odd occasion when I have bad nerve pain attacks and when I have multiple pains (headaches, nerve, sore body). But they only work a little bit for some pains. I have mainly relied on my heat pack for nearly every pain and heat cream for the longer lasting pains.
I just wonder if anyone else have experienced this at all and/or if anyone has any insights or ideas?
There is a long wait to see my gp. Also I was hoping these new pains would go away but if they get worse then I'll have to see someone. I just don't want to get told that it's all in my head or it's normal and then later on it gets worse and I end up hospital (that happened to me when I was trying to get a diagnosis of endo).
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Lejay
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I’m sorry to hear all this. I have had endometriosis for more than 2 decades.
Just to put your mind at ease, I have had a number of excision surgeries for endometriosis and in currently grade 4.
1. Neuropathy or nerve pain post-surgery happened to me as well. I was initially worried if there was anything that happened during my surgery but then realised that nerve pain is a symptom of endometriosis. I had a discussion about it with my surgeon anyway who put my mind to rest confirming there wasn’t anything sinister going on. I would speak to your GP or the surgeon who conducted your surgery just to check if there’s anything you need to concern yourself with.
2. I really wouldn’t recommend using google. I would however recommend Pubmed which has scientifically peer reviewed publications showcasing details about endometriosis. You may realise when you start to use Pubmed that not much research is actually available even globally for this condition but that also means you will understand some of the reasons why we can’t seem to get anywhere with managing symptoms just with medication. I hope this will help. But with regards to talking about new symptoms, do speak to your GP and Gynaecologist to see if there’s anything they could do clinically.
3. Post surgery my pains lasted for 6 months. As surgery is meant to remove the endo tissue, post-surgery this will come back. The rate at which this comes back is different amongst women. I managed the rate at which mine was growing through exercise and diet. Perhaps you could try it too if you feel it suits you.
4. Pins and needles, shooting pains, fatigue, muscle aches and body pains are all normal after surgery. The carbon dioxide that’s pumped into your stomach gets absorbed by your body post surgery and sometimes it can take a few months to leave your body depending on your activity levels. For me, these symptoms lasted 3 months after last year’s laproscopy. I had further laproscopy nearly 2 weeks ago and so currently I have these symptoms and also pains. As soon as I start walking normally and can back to my routine in terms of exercise (which for me is running), I know these will disappear.
5. Personally, I have always preferred to limit the use of drugs because I’ve used literally all of the pain meds available and had Prostap as well as Zoladex over the years. So when I started to get neurological symptoms about 5 years ago, I decided to use holistic approaches like diet and regular running sessions as well as acupuncture. NICE does recommend using alternative therapies for endometriosis so I wasn’t afraid to try acupuncture which really helped. As I was also diagnosed with pain syndrome because of my endometriosis, I also started to have fits or seizures as they were initially called. After seeing a neurologist, it was confirmed I was having vasovagal reactions because of the pain meaning my brain just switches off when there’s too much pain so I loose consciousness. It was very scary at first but then as I controlled my pain symptoms more and more, the vasovagal events also disappeared.
Please don’t think it’s in your head because it isn’t. I can understand how you feel because a few years ago I was even told by a paramedic that it’s in my head. I never felt it was in my head because I know what I felt and family/friends around me have also seen me during some of my pain episodes which were just awful. You aren’t alone so I hope you take comfort in knowing that there are others who have same or similar symptoms.
I think you should speak to your GP and treating Gynaecologist and explain these symptoms so that they can help you.
Thank you for the amazing reply. It definitely made me feel a bit more relieved!
My gyno did explain to me that I would be experiencing nerve pain after surgery for awhile. He told me to get a referral for a local pain clinic now if i had any future issues because there is a long waiting list. But I'm not sure if I should worry about that yet because I am still technically in recovery and my gyno did say because my surgery was extensive, it will take me longer than others to feel better or "normal " again.
I have refrained from googling but I have had to look up side effects for medications so see if any of my symptoms are related to that. I have a sensitivity to medication side effects majority of the time so I check just to see of its a normal side effect. And then monitor it.
That's interesting about the carbon dioxide lasting longer in the body. I was never told that. Makes sense though.
Another thing I thought of was the fact that Visanne is basically putting my body into a sort of menopausal state as Visanne is meant to stop my periods for 6 months. I havent got my second period post op so i think it may be working and i definitely went through and am still going through menopausal symptoms. But I also still got ovulation and pms pain and symptoms this month but no bleeding. Thinking that may be another reason for some pains and symptoms...?
Sounds like you have been through a lot! I'm glad you have found things that help you. I will keep these in mind. I have been better with my diet, trying to stick to endo friendly/anti inflammatory type foods. But I do struggle with exercise and even just general walking and physical movements for long periods of time because of the nerve pain interfering. I also get exhausted and sore easily and my nerve pain can be triggered by overdoing it too. I think I took it too fast earlier on after surgery and didn't pay attention to my body so now I have to keep reminding myself to take regular breaks. I do light yoga on my good days and stretching every day. But I still haven't made it through an entire day without a heat pack on me. I try to distract myself from the pain but nerve pain is a little bit harder to ignore, especially when it hits me out of nowhere and makes me cry out and crumble over in pain. Very embarrassing if it's in front of people, even my own partner and family members.
It’s good to see the pain clinic now itself whilst you are still in recovery mode so that they can start with their initial diagnosis and workup, it does take time.
To check side effects of the drugs you are taking, it’s always good to use the drug notes in the box or NICE. NICE overseas all treatments and practices used in the UK so they are reliable. That may help you get an understanding as to what other things you can do too.
Yes, Visanne is just like Prostap or Zoladex but milder. Yes, menopausal symptoms are completely normal because when the ovaries are switched off your body starts to go into menopause which ofcourse is temporary as when the drugs are stoped you will have your cycles once again. PMS and pains are all normal whilst being on the drug. I controlled them with diet and exercise.
Sadly, controlling the symptoms with exercise and diet takes time. I’ve consistently been at it for a decade. I don’t exercise during my pain episodes because I can’t even move when they come on but in terms of my diet, I don’t have any gluten, diary or wheat and it’s plant based. I also keep my meals light which has helped a lot. For me, this combined with a running regime controlled the neurological symptoms and especially the pins and needles etc. I now have them only post surgery for about 4 months and once I start my running it disappear.
It takes time post surgically to recover so take it easy at first. It’s so important that your organs recover before you start to walk or do anything that’s strenuous. I had my last surgery 2 weeks ago and only just started to walk around. I’m not planning to start running again for at least 4 more weeks because I know my body will not be ready. Till then I’m tolerating the body pains, cramps and severe back pain.
I totally understand how you feel, pain packs do help. I usually use them for a few weeks after surgery and then stop because I like to minimise them with holistic approaches.
I understand how bad the pain episodes can get, they are debilitating. I can’t count the number of times I’ve had pain episodes over the years which basically put me in such a bad state that I had to be taken to hospital when it was at its worst. I’ve been on morphine as well and then I decided to control the symptoms holistically which allowed me to drop the level of opioids I was taking to codeine. I know how embarrassed you may feel during these pain episodes. But one thing I do know is that your family and friends love you and care for you, they will understand the situation you are in I’m sure, so don’t feel embarrassed. Also, it may help if your family, friends and partner even get to know more about your condition and how you feel so that they can support you when you have these pain episodes.
Your pain clinic also should be able to provide you with useful information and material that you can talk about with people that are close to you. The pain clinic surgeons can also talk to you about modulation devices that could help you manage the pain too. May be take your partner with you when you go to see the pain clinic clinicians because that could help you ask any other questions you have in relation to controlling the episodes.
Take care of yourself and I hope things get better for you.
Your point 5, you say you use acupuncture. I'm looking into that next, what do you have done? What areas? How long is your appointment? How long do the effects last? What are prices like? What do I need to look for in the professional? Sorry for all the questions.
I have period cramps that start about 5 days before with lower back pain that then carries through my period, I don't like over the couter pain relief. My physio helps with specific massage and at home exercises for my lower back 7 days before my period- my work is sitting in an office so it'll be onging physio, which I'd like to keep. I have aromatherapy massage and lymph movement three days after my period - this helps as a kind of calming, re-centering and rebalancing, I love it.
I'm scared about the acupuncture so haven't pushed myself to try it, also what time of the month / cycle do you find it gives you the most pain relief? Ideally as close to my period as possible I guess but our bodies are more sensitive to pain just before, so help would be good! xx
You need to see a to discuss all your symptoms firstly with the alternative medicine providers to see what plan suits your needs. So, for me, I used it because of my neuropathy and didn’t want a pain modulation device inserted into my back. My pain scores were very high and i was diagnosed with pain syndrome so the acupuncture schedule was based on my clinical needs. The best thing is for you to discuss all your symptoms, their frequency and intensity. If you’ve been referred to a pain clinic already, you could also take your clinic letters to show these details to the alternative medicine practitioner.
The centres I used were the Kelly Sun Acculuncture clinic near Harley street. I’ve also used the London Accupuncture Clinic in winpole street (central London) These individuals are usually doctors in alternative medicines or registered with the British Society of Accupuncture. They are qualified in providing clinical advice using alternative medicine which is a NICE approved method. You can find out more information on the NICE webpage in regards to endometriosis and treatment interventions as well as alternative medicine use etc.
If your workday is mostly sitting down, Pilates could help you relax the back pain as well. I did try it many years ago but for me, what helped significantly was running combined with the diet and acupuncture sessions catered to my specific muscle group issues because I’ve had organs removed. Depending on the complexity of your endometriosis, frequency and rating of your symptoms, they will discuss your options with you. I didn’t want to go on an alternative herbal medicine plan completely as I felt it wasn’t for me so I picked and chose what suited my needs.
After a difficult cycle, the calming thing for me is to go back to running as it helps me feel better because of all the endorphins in my blood. This has worked for me for many years.
If I had to say what gave me the most pain relief, in all honesty, a single thing alone didn’t make any difference. A combination of diet, running, acupuncture and staying active as well as timing my excision surgeries along with the Prostap is what’s helped. This helped me reduce my painkiller (which were class A opioids) intake by 80%. If I had to pick one thing on it’s own, i have to say it didn’t work for me. I tried each one of these on it’s own at first and it didn’t improve the pain or my other symptoms like pins and needles, cramps, migraines, intermittent bleeds, heavy bleeding (up to 10 days sometimes) etc.
If you want to try acupuncture, I would say speak to someone first and see if it’s for you because if you are nervous, may be you need to see how comfortable you will be to continue the full plan they may give you. It can be nerve racking at first if you are afraid of needles but for me, it passed as I saw the results.
I like HIT but only post-surgery to get my strength back and then I start my running regime again. 30-40miles a week has worked quite well for me. Boxing is great too, I like doing 30 minutes after a 10 mile run.
I had lap for severe endometriosis (stage4) 13 weeks ago.
I am also getting lots of new pains which have really worried me . I put a post up earlier and got helpful replies from other ladies to indicate recovery can take 6months plus, which reassured me.
I am not getting the breast. Rib. Leg pain however ,that you describe .
I hope you get an appointment with a good gp to discuss your recovery.
My Gp has been supportive and I have found the helpful replies on this forum invaluable.
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Endo pain or post op pain? 
Post op pain and sickness, please help :( 
For those who have used visanne, how long does it take for it to be effective in relieving pain?
one week post op
