Pain after Excision Surgery...: Hi Everyone... - Endometriosis UK

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Pain after Excision Surgery...

nyla8514 profile image
10 Replies

Hi Everyone...

I'm hoping some of you can give me support and hope re: my recovery with this type of surgery. I had excision surgery 4 weeks ago after everything was ruled out and everyone believed I had endometriosis. I went to a very well known endo specialist surgeon, and he excised 12 areas of tissue and / or adhesions (small intestines, pelvis, etc) However, my biopsy came back negative for endometriosis. He still believes I have a menstrual reflux that I will be treated with using birth control.

After 4 weeks, I am still in a lot of pain. It's better, but I feel soreness / pain to touch on one of my incision sites. My lower right area abdomen / pelvis (where I had a lot of scar tissue removed that had built up from having my appendix removed almost thirty years ago) is very painful. I have burning still in my lower abdomen. I was diagnosed with pelvic floor syndrome and have been getting physical therapy for that and for post-op scar tissue. I have been able to do light work outs three times a week, but the shooting pains are exhausting and discouraging. I also still have a swollen abdomen (swelly belly).

I know healing takes time, but I don't know if any of this is "normal" and don't want to lose hope i'll get better. Would love anyone's guidance, suggestions, stories, or knowledge!

Thank you all!

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nyla8514
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10 Replies
Summer143 profile image
Summer143

Did you have a laparoscopy done before the excision surgery?

nyla8514 profile image
nyla8514 in reply toSummer143

no - this was my first one! they did an MRI that indicated endo and several other exams over the year. My surgeon and obgyn still believe it is endo and are treating it with BC. I'm just nervous the right side pain and swelling won't ever go away. It is brutal!!!!!

Apr11 profile image
Apr11

Not sure you should have been working out yet? I don't know that your abdominal wall would be ready.

Maybe just doing the gentle exercises the women's health Physio gives you.

You really need to ask the surgeon about this maybe email or call his secretary. Could also ask about acupuncture for scar tissue?

Sprinkles86 profile image
Sprinkles86

It took me about 5-6 weeks to recover from my excision surgery and even then I didn't feel 100%! Mine was pretty extensive like yours sounds like it is. I would really urge you to take it easy on the exercise front, it's a bigger operation than most people think so would stick to walking/swimming etc til you're a bit stronger. I found that I tired very easily for a while after my operation so give yourself a bit of time and I'm sure you'll be feeling better soon xxx

Jpreston profile image
Jpreston

Hi, my excision surgery was just over 5 weeks ago with an endo specialist. My recovery sounds very similar to yours. I keep worrying that the op wasn't successful although he removed all the endo. I have a constant pain in my lower right pelvis, which is where a lot of the excision was done but it is also in the same place I had pre op pain. Some days it's better some days it's worse but on the whole I think it's slowly improving. The consultant told me it can be 8 months before we can know for sure if the operation has been successful! Hard to keep positive, but I'm just taking a day at a time and hoping in time things settle. It's not what I expected but it is what it is. Give yourself plenty of rest when you can, it is a big op which is easy to forget. All the best and hopefully things will keep improving.

caroljane80 profile image
caroljane80

sounds similar to my situation - I did go to an endo centre but I'm left with a really bad pain on right side . Ive found not taking my HRT makes it go away. BUt then I get night sweats and I'm at risk of osteoporosis because of this and a whole load of other things. If it is improving then that is a good sign. Mine isn't improving it is just as bad as the first day I felt it ( was also the pain I went through all this because) I had hysterectomy removal of both ovaries and cervix. Now I'm waiting to see consultant in march after seeing him recently about this - and he basically put the blame back on me saying that id said the pain went on the zolodex - which it did . I'm wondering if I have ovarian remnant syndrome or the hrt is stimulating something in my body - it doesn't make sense as my ovaries were removed so estrogen levels should be low - needless to say they didn't check with a blood test.

kittykeepr75 profile image
kittykeepr75

My daughter had two fibroids removed in mid-September and still has tenderness in some areas. This is due to the nerves that are severed during the surgery. It takes months for them to heal and settle down, but they will eventually. If you continue to have tenderness, especially if it is accompanied by fever, swelling, and/or redness, you should report it to your physician right away. Good luck and feel better.

mollymm profile image
mollymm

Hi lovely, I had my latest surgery 4 weeks ago too. Don't worry, I've still got loads of pain. Burning pain, cramping - even some contraction type pains from time to time and I too have pain at one for the three entrance sites. It's not like the endo pain I had pre surgery this is definitely post op surgery. It's completely normal. I had surgery for this earlier in the year too and that took about 3 months before I started feeling normal. It's also normal to be swollen still. You may find that the swelling begins to go down during the day but gets worse by the evening. Again, it varies from person to person and op to op, but it usually takes at least a couple of months for the swelling to go. Last time mine was far worse than this time - I looked pregnant and was swollen for about 10 weeks although it got better gradually during that time. Please please please dont work out yet!!! It's far too early. Your body is recovering and it's going to take far longer if you push it at this stage. I'm desperate to work out again. Ive been unable to since my last surgery in January because my endo had got so bad and damaged some organs - so even after I recovered from that surgery I wasn't strong or well enough to work out - and I usually work out a lot. Try hard to be patient and don't worry - you will begin to recover from the surgery. Take care x

Did the biopsy show something else?

Just b/c it's not endometriosis doesn't mean it's not something else that could be causing pain.

nyla8514 profile image
nyla8514

Thank you everyone for the responses! It definitely helps to hear that others are having / have had the same experience and are coming out feeling better and this is normal for recovery.

Other than some pain / some swelling and still tiring more easily and tenderness, everything else is okay. My surgeon said that if working out feels like it is too much for me then to slow down (i.e. - more walking vs elliptical).

As for the questions asked - this was my first surgery. Although the biopsy came back negative, I'm being told it was caused by the same "menstrual reflux" those with endo experience that can cause or is a result of endo, but I simply don't have the endo disease. Everything else inside of me, my blood work, reproductive organs looked normal. I have had every test imaginable.

I'll take everyone's advice on easing up on the working out for out. I did accupuncture today and going back next week.

Prayers for all of you and thank you for all the responses!!! It seems the areas where the most scar tissue / adhesions were removed is where it still hurts.

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