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Endometriosis - questions - what is going on?

(16 Posts)
wonderwoo Sun 04-Sep-16 21:30:37

Okay, here is my story. Please bear with me:

I had moderate-severe endometriosis diagnosed 8 years ago, after about 15 years of pain. The surgeon told me I was "riddled" with it - it was very widespread. He removed some from ovaries and bowels, and he said he got rid of more, but was very clear that he had not got it all because much of it was microscopic and there was so much of it all over the place. Following surgery, my symptoms were much improved and I had two successful pregnancies.

However, following that I still had bad periods and cyclic pelvic, hip and leg pain. I had another laparoscopy with a different surgeon, but was very surprised to be told that she found no endometriosis. There were growths in my uterus and it was enlarged, so she thought I may have adenomyosis. Following a trial of Prostap (which did reduce symptoms) I went on to have a hysterectomy, but I retained my ovaries due to only being in my early thirties. Again, she says she saw no endometriosis when doing the hysterectomy.

Following hysterectomy, I was able to tell when my period would have been because I had cyclic pelvic and leg pain. (My pain got worse for a week every month, and also for a handful of days in the middle of the month, which I think it may be ovulation time?) The pattern continued for about 9 months, but has since been messier. However, I still get pain that gets a lot worse and then improves again, always in my pelvis and going down my legs.

My pain improved during pregnancies, and during breastfeeding. It also improved on Prostap.

Here are my questions:

1 Is it possible I still have those original endometrial implants, but that they have not grown and so are still microscopic, but cause symptoms? So, monthly hormones cause them to bleed, but the implants are not growing?

2 I am confused why my second surgeon could not find endometriosis, but my first surgeon was adamant he had left a fair amount behind. Is it possible my new surgeon is just not good at finding endometriosis and therefore I should ask for a second opinion?

3 Does anyone else with endometriosis find their pain gets worse with ovulation (pain lasts a few days)?

4 Does anyone else get leg pain with their pelvic pain?

5 I have pain all the time, but it gets worse cyclically - can this still be endometriosis if I am never pain free?

6 I don't want to ask for my ovaries out because I am not keen on a surgically induced menopause and hormones send me crazy as it is, so HRT scares me. And anyway, would HRT cancel out the benefit of removing the ovaries? I would do it if it was clear that it would help me. But it is about as clear as mud at the moment!

Sorry for the long post. Thank you if you have made it this far. Any information anybody could give me on what might be going on would be really appreciated.

wonderwoo Mon 05-Sep-16 10:00:43

Anybody?

hairymuffet Mon 05-Sep-16 10:14:54

Having a ' uterus only' hysterectomy hasn't removed the problem.
It has only removed your periods.
You will still have widespread microscopic deposits which will shrink and grow according to your monthly cycle.
I've been there and I don't know the answer.
Its a f***** terrible, terrible disease .

wonderwoo Mon 05-Sep-16 10:28:27

Thank your for replying hairy. Would those microscopic deposits not have grown over the years ans now be visible?

AttilaTheMeerkat Mon 05-Sep-16 11:00:04

Pregnancy, prostap and the like puts the endometriosis into abeyance. It can too easily recur.

Re your comment (my answers are underneath):-
Here are my questions:

1 Is it possible I still have those original endometrial implants, but that they have not grown and so are still microscopic, but cause symptoms? So, monthly hormones cause them to bleed, but the implants are not growing?

Yes. Your ovaries are likely to be "feeding" any endometriosis deposits as well.

2 I am confused why my second surgeon could not find endometriosis, but my first surgeon was adamant he had left a fair amount behind. Is it possible my new surgeon is just not good at finding endometriosis and therefore I should ask for a second opinion?

I would seek a second opinion given that the first surgeon thought your endo was extensive.

3 Does anyone else with endometriosis find their pain gets worse with ovulation (pain lasts a few days)?

Yes, I had pain up to and including menses.

4 Does anyone else get leg pain with their pelvic pain?
Yes, this was also one of my symptoms. I think in my case that endometriosis aggravated the sciatic nerves in my legs.

5 I have pain all the time, but it gets worse cyclically - can this still be endometriosis if I am never pain free?
Cyclical pain is one of endometriosis's main indicators.

6 I don't want to ask for my ovaries out because I am not keen on a surgically induced menopause and hormones send me crazy as it is, so HRT scares me. And anyway, would HRT cancel out the benefit of removing the ovaries? I would do it if it was clear that it would help me. But it is about as clear as mud at the moment!

Endometriosis and hysterectomies are uneasy bedfellows. Having such an op does not necessarily make a person symptom free. Also endo can get into other areas of the body too.

In any case you are going to have to sit down with a gynaecologist and discuss all this at length.

hairymuffet Mon 05-Sep-16 11:23:17

A trial of prostap for a few months may give you a couple of years with less pain and also be diagnostic of endometriosis. Its worth a try flowers

wonderwoo Mon 05-Sep-16 13:15:50

Thank you hairy and attila. I have an appointment with gynae doctor in a couple of weeks. I don't find her easy to talk to, and am nervous about asking all these questions. Last time I went she said "I don't know why you are here" as I walked in, in a huffy exasperated tone. Didn't exactly make me feel at ease.

I had prostate for about 4 months ans it did reduce pain, but it returned quickly afterwards.

Re leg pain... I used to get cyclical sciatic type pain, but nowadays it's a more generalised fluey-ache pain. Not sure if this can be endo or not.

I get the impression that as she hasn't seen any endo, then I catagorically don't have it, as far as she is concerned. She thinks I have pmt. I think I will give her one more go, and if my questions are not being answered properly, than I will ask for a second opinion.

I suspect if it is agreed that I do may microscopic endometriosis still, then a laporoscopy is not going to help, because how can you get rid of something you cannot see. Maybe medication is the route forward.

wonderwoo Mon 05-Sep-16 13:16:33

Prostap not prostate! Have never had a prostate!

AttilaTheMeerkat Mon 05-Sep-16 15:36:14

wonderwoo.

I would contact the hospital dept and ask to see another gynae; its no point in trying to talk to someone who has previously made you feel so ill at ease.

Do not know if you are UK based but this is a good website:-

www.endometriosis-uk.org/

wonderwoo Thu 08-Sep-16 00:21:04

Thank you. Yes in the UK. Will check out the website. (I have seen it before, but my queries keep evolving over time, so it makes sense to look again).

lynn09 Thu 08-Sep-16 09:29:33

wonderwoo,
I had very similar problems with you, low back pain endometriosis, I was diagnosed with endometriosis over 10 years ago. I was doing well after having my child until i started having pain when trying to pass bowels. Sometimes back pain was low middle and sometimes low right side. I went to countless doctors and tried different treatments, but no results. finally with the help of the herbals medications that Dr. Lee sent to me, symptom reduces a lot, currently, I'm having the last month's treatment, and I think it will be ok soon. It's called Fuyan Pill if you want to give it a try.

bastardneighbour Thu 08-Sep-16 09:47:01

lynn09 what you are recommending is nonsense. 'Fuyan Pill' is not safe to use, does not treat endometriosis and is made from endangered animals.

Here is a warning from an endometriosis forum:
Ladies please be aware that the Chinese representatives trying to endorse the "Fuyan Pill" on here are preying on our vulnerability. There are some testimony's online that appear to rave about it but if you look at the language of some of them they have been engineered by the distributors which is a common tactic of these companies.

They tell you they have a medical patent and that the patent office wouldn't register things that don't work - this is just plain false, a patent is the registration of an idea, whether it works or not, I could register jelly hip replacements and as long as no-one else had registered it and I pay my fee bobs yer uncle! China has a terrible reputation for patent infringement anyway it's not the best system.

Also the pill contains Pangolin Scales, if you love animals this will turn you off it instantly, a Pangolin is a type of Anteater and, you guessed it, their numbers are in steep decline because of the Chinese medicine market and I am pretty certain we don't want to destroy even more of our beautiful creatures on this earth.

I know we would all love a "cure all" but I don't think this is the answer.

lynn09 Fri 09-Sep-16 04:28:00

@ bastardneighbour
i didnt know it contains pangolin, but the chronic pain became increasingly worse and had seriously impacted my life, i couldn't bear the pain and it’s the truth that my paid and endometriosis were cured by fuyan pill, so far no side effect.

AttilaTheMeerkat Fri 09-Sep-16 09:20:45

Endometriosis is not cured by such quackery. All these quacks do is prey on the desperate to get well, they only want your cash.

Jessica1004 Fri 09-Sep-16 09:57:19

I have the same case with you. For the diagnosis of endometriosis, besides with periodic menstruation pain, also note whether dysmenorrhea is continuous and have sexual intercourse pain.

Endometriosis can be cured by traditional Chinese medicine, Fuyan pill. It is a kind of herbal medicine with effective therapeutic effect and has no side-effect. I took it 2 months and the condition got better. Best of luck.

wonderwoo Fri 09-Sep-16 10:29:30

To be honest, unless there is good quality evidence, with controlled studies showing a positive effect on endometriosis, I am not about to start trying herbal medicines and the like. I think too many peoples' pockets are lined to the cost of vulnerable and frankly desperate people who are convinced to try things that are not proven. Just my opinion.

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